Living And Dying With Dignity--A daughter's journey

Book availability

2011-11-27T05:50:00.000-08:00

My book is available from the publisher, General Store Publishing House in Renfrew.

General Store Publishing House
499 O'Brien Rd. Box 415
Renfrew, Ontario. K7V 4A6

Call Us ~ Toll-Free 1-800-465-6072 / Tel: 613-432-7697
orders@gsph.com

Also:

The Book Worm 76 Foster, Perth, Ontario

(613) 267-8773

Undercover Books,

171 Highland Street, Haliburton, ON, K0M 1S0

(705) 457-4241

Book Stop - both locations: Barrhaven & Orleans!

Muskoka

Penny Varney's and

Penny Varney & The Book Store in Gravenhurst

(705) 687-0555

Table of contents: my book on Ontario palliative home care and LTC

2011-11-21T02:34:00.000-08:00

My book is part memoir, part research-based. Since my parent's generation were reluctant to ask questions, and I didn't know which ones to ask, I have included information about your rights as a patient, i.e., treatment plans, discharge option, and questions to ask your oncologist. You have a right to know treatments, treatment symptoms, options, and quality of life issues. There are many barriers to getting health care in Canada.

The capitalized headers are chapter titles. The lower case sentences explain chapter content.

INTRODUCTION
PART ONE: MY PARENTS’ FINAL YEARS
2002: THE RAVAGES OF OLD AGE - aches and pains become issues, multiple comorbidities.
2003: MOM’S SURGERIES; DAD’S SEIZURES - both have surgery: Mom for leukplakia, Dad has his brain tumour removed.
2004: STRESS--AND MORE STRESS - my caregiver story as I juggled work, parenting, and parenting parents.
2005: INDEPENDENCE ISSUES - no longer can they manage their ADL and IADLs.
2006: MOM’S PASSING - Mom passed away at home and no one told us about Hospice volunteers. There were endless trips via ambulance to hospital. Dad was having radiation treatment 200 km to the south in Toronto during this time. He became delirious with infections, a risk from radiation no one told us about. He was sent home from emergency with no Rx, unable to use the toilet.
2006: THE WRITING ON THE WALL - Dad's brain tumour grew back. He lost cognitive and executive function. I wrote about our search for Long-Term Care.
2006: I, CAREGIVER - How difficult to feed Dad almost every day, with anticipatory mourning. I went on anti-depressants and had to stop working at my teaching career. I was depressed with bereavement issues, menopause, as well as stress from work.
2007: DAD’S PASSING - I wrote about his final months, weeks, days as I fought for care, medications, support from health care. I provide information on physically and emotionally providing care, i.e., mouth care while dying.

PART TWO: THE PERILS OF AGING AND OF CAREGIVING: THE RESEARCH

THE STATISTICS OF THE SENIOR YEARS - how many of us have pain and multiple medical issues? Read about: cholesterol and depression.
ONCOLOGISTS - What questions to ask - what to expect and what are your rights?
LYMPHEDEMA - When a lymph node is removed there is swelling and the potential for clots.
BRAIN TUMOURS 101 - diagram of brain function. Dad lost his retrieval of nouns and had other communication and cognitive issues.
DEMENTIA AND DELERIUM - What is the difference? It is important to know.
DEMENTIA: ETIOLOGIES, RISKS, PREVENTION AND AMELIORATION
SYMPTOMS AND BIOLOGICAL CONSEQUENCES OF DEMENTIA - Plaque build up in the brain prevents the brain from processing information and results in behavioural, social and emotional disorders.
MEDICATIONS - Are you at risk for polypharmacy? Do Medscheck.
CAREGIVING IN CANADA - What are your rights as care recipient or caregiver? What can you expect? Sources of information: check out my senior's blog.
PATIENT NAVIGATOR - This works well for Alzheimer's patients: First Link or the support from the Cancer Society, but we all should have the benefit of an advocate.
INTRACRANIAL PRESSURE: SYMPTOMS - What can you expect with a brain dysfunction?
SWALLOWING DIFFICULTIES (DYSPHAGIA) - This is a 'normal' part of death and dying as the body shuts down.
CANADIAN CANCER SOCIETY - They are a valuable source of referrals and references. Peer counsellors can help you. They also provide specific disease-related information.
GERIATRIC ASSESSMENTS - This is crucial in preventing or ameliorating dementia symptoms.
FAMILY MEMBERS AND AILING SENIORS - What are your rights?
QUALITY OF LIFE AND END-OF-LIFE CARE - Where do you go for help? Get a geriatric assessment.

CONCLUSIONS AND RECOMMENDATIONS
CAREGIVING IN THE HOME - It is difficult and youare at risk for stress.
STRAINED FAMILY RELATIONS - Many dysfunctional families become worse.
CAREGIVING BY OUTSIDE AGENCIES AND SUPPORT WORKERS - Who you gonna call?
PLACING A SENIOR IN LONG-TERM CARE - what to take, what to leave,
RESIDENTS’ RIGHTS AND NEEDS - Bill of Rights
SIGNS OF IMPENDING DEATH
THE ONTARIO BILL OF RIGHTS FOR RESIDENTS IN LONG-TERM CARE - available on-line.
VISITORS TO FAMILY AND RESIDENTS IN LONG-TERM CARE - what can you take? What can you do when visiting?
FAMILY HEALTH TEAMS AND BIOETHICS
SUGGESTIONS FOR FAMILIES OF THOSE IN LTC - Be vigilant, visit frequently and at different times.
INDUSTRY ISSUES - Where are we headed?
SUGGESTIONS FOR THE GOVERNMENT

REFERENCES
ACRONYMS--SENIOR CARE
GLOSSARY

Speech: stories in palliative care

2011-03-31T07:10:00.000-07:00

Casino Rama hosted the June 9th, NSM Palliative Care conference, at which I spoke and signed books.

Monday, Feb. 19, 2007

2010-07-31T07:08:00.000-07:00

We began with coffee, chats and fond memories, again. I woke at 5:30 a.m.. I had had insomnia and went downstairs to have a change of venue. I prepared a fire, nestled into the couch with a blanket overtop. I found that listening to CBC Radio: Deutsche Welle, helped. News from Germany lulled me with their voices and gentle tones. The headphones meant I didn’t wake anyone. Eventually I fell asleep and that was some much needed extra sleep. I was tired. The cats went upstairs to wake up Brian, who ought to be in the kitchen making coffee. They knew nothing happened without my getting coffee and then I gave orders from the day. I am supposed to be ‘she who is in charge’.

We hustled to get ready, lulled into a slow start to the day. Robin and I went back to the funeral home. I remember the parting words the last time we were there. One of the people that worked there said, “See you again.” I laughed at the. I knew I would but didn’t want to. We arranged more of the details and told Cathy the date we had chosen. She took copies of the birth certificate, marriage certificate. She asked if there was a will. I had to sign a paper that she would submit to the government for CPP. They give the estate $2500 death bonus. It wouldn’t pay for his burial.

Robin, Cathy and I went downstairs to see the other urn we had had our eye on since mom’s passing. We noticed it and thought it might be suitable for dad. It was either that or the painted slate cover with two loons on a lake, a spring scene. Mom’s scene was that of winter. We looked at the one that has two hockey players carved into the side of the wooden urn. What I thought was that we could hang the two slate paintings in the cottage, after we intern them in the summer. We began to come back upstairs. I was in the lead, Robin and then Cathy behind me. We left the main room and turned the corner to go into the hall. I remember that I had my handkerchief in my pocket. I reached for it. As I walked something fell out of my pocket. As I walked I accidentally kicked it.

By the time we spotted it Cathy was beside it. She picked it up. She couldn’t figure out what it was. It looked like something you would plug a hole with. It was a Rolo. It was peculiar, since I hadn’t brought any with me. Brian had brought some to dad last week. I had started eating them the night before dad died as I sat in his room. They were in the basket we kept on dad’s dresser, with his hymn books and bible and his straw bear. I was wearing a long jacket that I had not worn in months. We were a bit spooked. I couldn’t figure out how it had gotten there. I felt it a nod from dad – that we were headed in the right direction.

I popped in to see Michelle in the home. I received lots of condolences from folks in the LTC Home. Robin and I took a break and had coffee and bagels at Oliver’s. From there we went to pay dad’s bill at the pharmacy. He had had endless pills. This might save me getting a bill later. This is something I had been doing for months.

We needed to have us sign papers as administrators – the legal term being “application for state trustee with will”. Mom’s estate still hadn’t been tied up, but it should be fairly easy, since she had a will and it all went to dad. We needed to list all of dad’s debts and assets, send the bill from the funeral home to the bank, transfer ownership of the van, change the van insurance, house insurance, file taxes for mom and dad for 2006, then dad for 2007. Once all that was done the will would be settled and we could disperse assets and call it a day. Well, it will take months! We will need endless copies of the death certificate, many places would only make the required changes with an ‘original’. The funeral home arranged for the death certificates.

On the way home we popped in to get mail. There was nothing there. Rob offered to put up the obituary on the little bulletin board they have for such a purpose. It is a good way to let folks know in this small town. I went in a told the postmistress and she expressed her condolences, too. Everyone in town knew mom and dad. I gleaned much sympathy. It was comforting.

Preparing the way--Thursday, February 15, 2007

2010-01-27T07:08:00.000-08:00

An excerpt....
The phone rang at one a.m. The PSW had gone in to visit Dad, which they did hourly, and he seemed to be very badly off. They would touch his arm and speak his name. I am not sure why they would do this. Surely it would be better to leave him in peace, sleeping? He was unresponsive at this time. They thought I should know. They were not sure if I should go in or not. They were not sure how quickly he might leave us. They agreed to call me back at 3:30 a.m. and keep me updated. They did not call back, and I fell asleep at around three. I woke at seven a.m., hurriedly got dressed, had some coffee, and packed up a blanket, a thermos, and some other things.

I had gone into the LTC at around eight-thirty a.m.; I saw the nurse in the hall and asked if she could tell me about the rest of his night. She hadn’t had time to read his file but promised to get back to me. I went into his room. He was lying on his back with an oxygen tube in his nose. Apparently, even when mouth breathing, enough oxygen got into his lungs as he sucked in the air. Dad was mouth breathing, with some rattling in his chest. There was paraphernalia on the table beside him; large Q-tips, a container of Vaseline; another of something like mouthwash. I had no idea what it was for. His eyes were one-quarter open, and he was unresponsive.

I had brought in a big comforter, which was washed and returned later, along with several pillows and pillowcases. They proved invaluable later on. The PSW asked if I wanted him to go to breakfast or if I wanted them to bring in a tray. I knew he couldn’t eat. I had tried giving him some water on Tuesday and he could not suck from the straw. At this point he hadn’t had anything to eat or drink in twenty-four hours. He couldn’t eat or he would choke. From time to time he would hiccup. I thought he might have had a slight convulsion. He kept on blinking, but did not say anything. I dug under the covers and found a hand to hold. Surprisingly it was warm. His feet, remarkably, were not so swollen anymore. This was peculiar, as this condition had begun in the summer and had not gone away despite diuretics and his special socks.

There was a call in to the doctor, who did not work on Wednesdays but would be in his office later. Were we not entitled to health care and visits by a doctor? How enervating this was! The RNs had no control without the authority of a doctor who did not even bother coming in to see my father. Finally, at ten a.m., we got an order for Dad to have injections of morphine, 2–5 mg every two hours, as needed. It was such a relief. They gave him 2 mg and he seemed more comfortable. Some workers thought he was not in pain, but I knew better. I knew him so well by now. He was in a hospital gown. I asked about the toilet seat, which had been changed for a higher one. He hadn’t been on the toilet for months. I asked if they could put a regular one on now, as I knew it would be a long few days and it would be easier if I could use his private bathroom toilet rather than going down the hall. The custodial staff needed a nurse’s order to remove the booster seat. The only public washroom that I knew of was on the main floor. This would make it very handy for me, as long as no one walked in on me! In fact, I nearly collided with a staff member when I came out of the door a couple of times.

Audrey, from the front desk, came up to the room and told me that the Director of Care would be in to see me before long. This was good news. The PSW said to hit the call button if anything changed, or if I needed anything. They looked after me. They had put a radio in the room and they were playing some old songs. It was comforting. They shifted him at 10:30, but did not otherwise disturb him. I decided to go and get something to eat. Brian had poured me a coffee in his travel mug and I knew I was getting light-headed. I was scolded affectionately for not staying out and having a relaxed breakfast, but I wanted to get back to Dad. I had my second cup of coffee and breakfast sandwich in Dad’s room.

I phoned Brian. He said he would come in around noon. Then the Director of Care (DOC) came in. She found us two chairs, and we settled in for a chat. She explained many details to me: outlining what I could expect in the next few days. She gave me some information I had not heard on mouth care, signs of death (see the final section of this book) and what they would be able to do for us. She said he could have his morphine injections until the end. It was a judgment call when he needed another injection, but I was the one in the best position to make that decision. It was far better to err on the side of comfort, rather than not enough. He had been aphasic (uncommunicative) for days. She explained about the oxygen. If they don’t have oxygen patients could panic because they cannot breathe. It was a comfort measure. She explained that the body could go three minutes without air, three days without water, and three weeks without food. Dad was two days without water at this point. Food was a distant memory.

The DOC explained the symptoms of approaching death, all of which Dad had demonstrated in the past few days. His breathing softened and came and went over time. We could expect apnea (periodic cessation of breathing), Cheyne-Stokes respiration, cyanosis, and other symptoms.

A Web site entitled, “As Death Approaches” says: “The fear of the unknown was always greater than the fear of the known,” and that was true. It was comforting to know what to expect, not that all of this had to occur. She reminded me to look after myself, to take regular breaks. She said to talk to him and let him know I was there. She felt for his heartbeat, which was weakening. She showed me how to do mouth care and told me that the mouth care he had received so far was excellent. (I was still not giving up my day job!) Staff came in and helped check his position. Dad was moaning and he was twitching. He could have been having more seizures. His forehead, where the tumour was growing, was a brighter red than elsewhere.

Brian arrived to spell me off and I went home for a break. He phoned on his cell phone every few hours, while I supervised the roofers and chatted with them. At five p.m. the clouds began rolling in, and we were having snow squalls. I told Brian to come home. I had put a phone call in to my brother to tell him what was going on. He was out in his camp at the mine and hard to reach.

I made it back to the hospital for five-thirty p.m. after picking up a Sub sandwich, a couple of juices, and potato chips--to hell with the weight management. At 5:50, the doctor arrived--he had decided to pop in and see if I needed anything. Not now, thanks! The RN came in at 6:50 and every hour from then until she left. She checked Dad and asked if I thought he needed more morphine. In hindsight, I wish I had given him some. I did not see evidence that he was in pain, but felt that he had no way of letting me know. He was comatose. He was still blinking; his forehead and hands were red. He was breathing five times every ten seconds. I don’t know why I measured it. It was good to have something to do, other than the mouth care.

I rearranged the big easy chair twice, eventually pulling it out and putting the comforter and three pillows on top. It was comfortable. The oxygen tank pulsed all night, a form of white noise that cancelled out all the noises in the hall: people chatting, pages for various staff members, residents wandering the halls. I had brought my computer with family photos on it and was sorting the photos, travelling down memory lane and remembering all of the wonderful things Dad was and had been for me and for many others: father, husband, chorister, churchgoer, and volunteer. At eight p.m., he was breathing six breaths every ten seconds. By ten p.m. I had inhaled my food, had one of my juice boxes, and watched four CSI’s[1] in a row! It was bizarre and most surreal sitting there checking him every so often. It was comforting to watch TV and remove myself from the situation from time to time. It was a breather of sorts.

I went closer to Dad for the umpteenth time, looking for signs. The RN had checked his feet for cyanosis, but I found it in his hands. I looked at one eye and a tear was starting to fall from it. For some peculiar reason I hesitated--do I ask for more meds? He was otherwise quiet and did not appear in pain. When Dad’s other eye began to tear I pushed the buzzer and asked for morphine. It was 10:45 p.m. I looked at Dad’s ribs sticking out; his organs were so small; there appeared to be nothing left of him.

At 11:00 p.m. I did mouth care for him, just as Diana had done. I made a mess and got Vaseline on his beard, but did not worry about it. I knew he would forgive me. I held his hand and watched more TV.

[1] An American TV show about crime scene investigations--CSI’s.

What to expect?

2010-01-15T12:08:00.000-08:00

--February 7, 2007
Dad was not putting sentences together very well--he could draw up many nonsensical words. He was napping every few minutes. He had some of his lunch still in his mouth. He was gesturing towards the bed and I knew he wanted to sleep. We pushed the call button and Cynthia came to our aid. She told us she would get Sharon to come and put Dad into bed. Sharon had a lovely sense of nonsense! Dad always smiled when he saw her. She is an attractive woman, perhaps in her thirties or forties, with dark hair and a winning smile. She always made a point of bending over, or kneeling down, and getting at his eye level. She told him she was going to get him into bed. I loved it when they treated him like a person and someone who might be sentient, even though all indicators pointed to the other end of the spectrum.

They brought in the big mechanical lift. This was a piece of equipment about five feet high that was plugged in to charge its batteries when not being used. On wheels, it could be rolled and moved around the room easily. Sharon made Dad lean forward. They put the jacket around his shoulders and up under his legs. She told me that he really did not like it. She apologized to him, even though he couldn’t hear her, for having to use the lift. It was a touching gesture and I think it helped. It certainly helped me. I remember one time that he enjoyed it and was laughing and smiling at me as he was being lifted. Once he was in bed, he was asleep in thirty seconds. We tucked him in. I kissed him goodbye and left.

I adored Sharon’s bedside manner. She was always respectful, kind, and caring at a level that went beyond her training. Her spirit embodied that of the PSW: she treated Dad with such dignity and respect at all times. Despite his inability to hear her, she always explained what she was doing. Jill Bolte Taylor, in her book My Stroke of Insight, demonstrated the respect, or lack thereof, that some staff members or visitors display to those who are perceived to be ill. Dr. Bolte Taylor suffered a life-threatening blood clot in her brain and wrote of her experiences. Since she had moments of clarity, with little brain function on the left side of her brain, she was able to understand emotions and feelings without having the language to articulate them at the time. She reminds caregivers and staff members that the best way to help those who are ill is to let them sleep. Beyond that, a caregiver’s respectful attitude is perceived on a deeper psychosocial level even by those with brain injuries and apparent dementia. She found that those who came in to visit her, if they possessed a positive attitude, and brought energy and a strong spirit into her room, gave her added energy. So many burned-out workers in LTC are hard-pressed to keep their energy up. So many of our RNs and RPNs are stressed-out beyond their abilities to cope. This has a profound effect on those in care.

This new level of Dad’s illness created in me a visceral reaction that still haunts me. I kept fighting the reaction. It affected my whole being: body, spirit, and soul. It was very upsetting, and I kept thinking that I would be getting better soon. I would learn to manage my grief for my late mother, as well as grieving the loss of my father as I knew him. Each stage had an effect upon me. Eventually, I would come to terms with all I had been through.

I dreaded the next levels from here in Dad’s care. I could not find out any information on what to expect. From a Web site I found out what I could expect in the last forty-eight hours. Eventually, it said, cancer patients succumb to a brain hemorrhage as the cancer cells fight for oxygen and destroy the brain cells. I figured that there would be pain, as there was for my mother during the last years of her life. I remembered going in every morning and after school, checking to see if she was still breathing. When I went in to see Dad, he was very still.

'My stroke of insight'

2010-01-11T07:40:00.000-08:00

Jill Bolte Taylor, in her book My Stroke of Insight, demonstrated the respect, or lack thereof, that some staff members or visitors display to those who are perceived to be ill. Dr. Bolte Taylor suffered a life-threatening blood clot in her brain and wrote of her experiences. Since she had moments of clarity, with little brain function on the left side of her brain, she was able to understand emotions and feelings without having the language to articulate them at the time. She reminds caregivers and staff members that the best way to help those who are ill is to let them sleep. Beyond that, a caregiver’s respectful attitude is perceived on a deeper psychosocial level even by those with brain injuries and apparent dementia. She found that those who came in to visit her, if they possessed a positive attitude, and brought energy and a strong spirit into her room, gave her added energy. So many burned-out workers in LTC are hard-pressed to keep their energy up. So many of our RNs and RPNs are stressed-out beyond their abilities to cope. This has a profound effect on those in care.

Insomnia

2009-12-01T12:23:00.001-08:00

“It’s not mine”--August 14, 2006, 7:30 p.m.
On our drive into Gravenhurst, I spotted a black road-kill squirrel. It rested on the double line in the centre of the road. Its little tail fluttered in the breeze. From across the road, we spotted turkey vultures. There was a mother and her hatchlings. They are the natural garbage collectors that keep our Muskoka clean. They flew across our path and almost hit the car in their efforts to find food in this dry August month. One never knows what kind of wildlife will fly out of the forest.

When we went in to visit Dad, it was noon and he was sleeping. We did errands, casually puttering around the town. What a relief not to have to work. It was incredibly stressful working in April and May and looking after Mom. Thank goodness the memorial service was over. I began working on Dad’s obituary and announcement. It was good to prepare. I found it lovely looking through papers and uncovering the facets that made up my father while he was still a sentient human being. I had forgotten much and came across a great deal more I had not known. The grieving process is complex, but necessary.

Today was a really bad day. When we returned, Dad was awake and in a foul mood. He adamantly refused to put in his hearing aids, put on his eyeglasses or pants, eat his breakfast, or take his meds. At each request he would say, “It’s not mine. It’s nothing to do with me.” He refused to use his walker. He knew he had lost all control of everything around him and in a juvenile temper tantrum he decided he would not co-operate with anyone. He sat on the edge of his bed repeating his mantra, “It’s not mine. It’s nothing to do with me.” It was a clever statement and we still use it often when angry and frustrated.

As his agitation increased, it became increasingly difficult to work with him. He understood little. His hearing aids were not working. We thought it was the swelling of the ear canals. We were flushing his ears out weekly, but the wax damaged the hearing aids. He could not figure out how they worked. He would fiddle with them and turn them up so loud they squeaked. It drove people nuts at his dinner table. One person complained and so they changed his table to a more amenable group. It broke Dad’s heart. He was very angry that someone had complained. Mom and Dad had spent much of their lives looking after others; my older aunts and uncles, acquaintances--as they became unable to do things for themselves, my parents pitched in.

Dad would often wander around after nine p.m. and later after most of the residents were in bed. Dolly called for a staff member to come and look after him. Bless her, for her help. He had gotten up and was in the hall in his undershirt and boxers--without his walker. He must have used the railing on the wall for support. He got himself into the sitting area at the end of the hall and was in a chair, unable to get up. Dolly said it isn’t the worst thing she’d seen. She had found another resident in the same sitting area wearing only a shawl. Dolly sent her back to bed. Dolly was such a good person looking after some of these lost souls. His insomnia was having a bad effect on his routines and the ability of the retirement home to take care of his needs. I constantly racked my brain to figure out how to resolve these issues.

We had been scheduled to go to PEI to see my actor-son in his latest production, Anne and Gilbert: the Musical. I could not go and leave Dad alone. Yet again my parents’ ill health made me choose caring for one of them over seeing to my children’s needs. It was too far away if something happened to Dad. I had to advocate for many issues for my father. This was not the time for me to be away, but we hadn’t had a real holiday in two years. I should have taken the break. I was stressed beyond understanding. I was hoping that my family understood. Brian remained steadfast at my side.

The oncologist: back to Toronto

2009-10-21T14:27:00.000-07:00

--August 17, 2005

By August, Mom had to go to Toronto for another appointment. It was in regards to her new tumour, number five. She refused to let me go along. By now my course was finished and, being a teacher, I was available if needed. She was adamant. I should have been stronger and fought this. She could not hear properly and was under stress. At age seventy-nine, she had an unfailing trust in doctors, who tended to gloss over details and use acronyms that only they understood; they treated elderly patients as if they were younger and had perfect hearing and cognition. The truth was that radiation and chemo has a profound effect on seniors who are already frail, and Mom was not offered statistics that took her age and condition into consideration. I should have been there to ask the questions that burned in my brain. One cannot move forward without all of the information.

The doctor told Mom that he was not sure that the chemo he suggested would work. She wanted to give it a try. I should had gone in with her and asked the questions we all had: treatment rates, survival rates with and without the invasive treatments, survival rates based on age and stage of life. Many people facing “the big C” cannot and do not process much of the information presented at the time it is delivered. They have information overload and need an advocate to keep information straight, take notes, and provide help in understanding the information. I ensured that I took notes when Mom phoned me with information. I kept diaries all the time, as did Brian. I kept on doing research on my own, but could not find anything on leukoplatia (I learned later, in 2008, that it was leukoplakia). “Cancer in the groin” was covered, but it did not seem to apply to her situation.

A selection of links

2009-10-12T11:47:00.000-07:00

A selection of links related to brain tumours, cancer & dying

Book Stop book signing

2009-10-04T07:14:00.000-07:00

We had a grand time. Some friends popped in, and we met some very nice people.

Many thanks to Audrey, of Book Stop, who made me feel welcome.

They have two locations: Barrhaven and Orleans, near Ottawa.

Book Stop in Orleans, Ontario (on)

Name: Book Stop
Street: 1224 Place D'orleans Drive
Orleans, on K1C7K3-
Phone: (613) 841-7897

BookTour: Authors Speaking at Book Stop - Barrhaven (5-1 Jockvale ...

Book Stop - Barrhaven. 5-1 Jockvale Road. Get Directions

Mom’s passing--Saturday, May 13, 2006

2009-09-30T05:56:00.000-07:00

I took off for the university early in the morning to prepare and deliver my remaining workshop. I had heard no word from Bala and hesitated to phone them. The buzz was exciting. The conference was aimed at helping female teachers to take risks and incorporate technology into their curricula.

My well-earned break was to be short-lived. While I was out presenting my workshop, Robin had phoned the hotel and left a message to for me to call. Brian, arriving at the hotel before I finished my presentation, returned the call to Robin. As I walked into the hotel room, Brian gave me the news that Mom had passed away.

I never felt grief, just a giant sucking in of breath. I focused on what needed to be done next. We took a moment in Toronto to have a good lunch, make plans, and draw up checklists of things that needed to be done. It was surreal.

Apparently, on Friday, Robin had taken Mom to the hospital in the evening. A couple of neighbours had gone with them but came home later that night to check in on Dad. The hospital could not do anything for Mom, and Robin brought her home at about three-thirty a.m. on Saturday. They went back to sleep in their exhaustion, Mom and Robin sleeping on respective couches. They woke around seven a.m. and talked a bit about grandkids, and so on. They had good conversations, in between Mom’s naps, and laughed over good times. I missed that opportunity. I have to learn to let this go and deal in the present.

Mom’s breathing got more and more shallow. Eventually, around nine a.m., Robin looked over at her and saw that she had stopped breathing. Dad, on prescriptions for infections, was quite out of any concept of reality. He became very upset and told Robin to get her body out of the house. Poor Rob had to hustle, with the aid of his cousins, to find an undertaker to remove Mom’s body. Dad was emotionally distraught, Rob said, and could not deal with all of the things he needed to deal with. He did not recognize Mom’s body as his dearly beloved late wife. (Dad was suffering from prostatitis, which we did not know at the time. He was incoherent much of the time and was having difficulties getting to the bathroom.)

I must go back in time to explain this next problem. In their will, Mom and Dad named my cousins (husband and wife) as executors. We are not sure why, since the will was redone in 1998, and Robin and I were adults at the time. These cousins live in Southern Ontario, and it is a fair distance to visit here, especially since they have a farm. Fortunately, they happened to be visiting in the area at the time. Robin and the cousins made arrangements to send Mom’s body to the funeral home and to have her body cremated.

Once at the funeral home, they signed the agreement with the funeral home. My cousins declared my father unfit to be in charge and took ownership of the problems. Dad certainly was in no condition to take care of these things. In hindsight, my brother and I should have simply signed the agreement with the funeral home and taken control. We had power of attorney for both medical and financial affairs. In the meantime, my cousins began acting as executors and, once they had done so, since Dad could not at the time, they had complete signing authority for all matters. This became a problem later when trying to remove Mom’s name from documents and put them solely in Dad’s name.

All of the arrangements had to be done between my cousins and the funeral home from this point on. We could not even take her remains out of the funeral home for the memorial service, as we were not executors. Our cousins had to sign a letter later, as executors, giving us permission.

By the time Brian and I arrived from Toronto, the funeral arrangements were made and the contract signed. My cousins and my brother had begun writing Mom’s funeral announcement, but they did not know some of the names. The obituary left out Mom’s dear adoptive sister in Lethbridge, whom I had not seen in more than twenty-five years. I felt bad--another mistake for my hindsight list. I had to take over this job. The next day was Mother’s day, and I had an obituary to write. In hindsight, we should have postponed the small family funeral until a later date, rather than having it a week later.

Hearing aids & diet

2009-09-27T06:23:00.000-07:00

Dad played constantly with his hearing aids; his ears bothered him. He would try to adjust his aids. Today he refused his bath. His right foot was still painfully swollen. His eyes were itchy and he was on antibiotics for another urinary tract infection. It was a miserable life. His walker, missing yesterday, had been returned. The PSW told me that Dad had been up at night. He “tore up his room,” they told me. I did not ask for too much information. He was wandering down the hall. The charge nurse told me that they gave him some Ativan to calm him down. I thought I could have used one. I wondered what all these drugs did to him.

After checking with the dietitian, we figured Dad had eaten only about one-quarter to one-half of two meals in two weeks. They kept careful records and weighed the patients regularly. He was refusing most meals. Anorexia nervosa is a disease that primarily affects young women. DSM-IV-TR (APA) defines it as “a refusal to maintain body weight at or above a minimally normal weight for age and height.” It is a psychological disorder that has biological effects as the individual tries to manage or control his or her environment by controlling the amount of food he or she eats. This was Dad’s situation. I have seen it in many seniors due to many issues. It is a combination of lack of appetite and a means by which one can feel as if they are in psychological control. There was nothing to do about it. He would not have benefited from counselling, as he could not hear or cognitively process a therapeutic treatment or process.

Book signing - #1

2009-09-26T15:14:00.000-07:00

I had a great time talking with friends.
One friend, on her way to Gravenhurst for a wedding, popped in to see me. We had never met, except on-line.

Jacqueline, the store owner, set up a lovely display in the window, as well as a table with an antique, red velvet chair for me. I felt like a queen.

What a pleasure to be at Gravenhurst's Book Store.

A dear friend of my parent's came in, since she had seen the ad, and I met some very nice people. One of my books we sold to a dad looking for a present for his daughter who is taking a Health Care Aide course. I was so pleased. the book really helps people like that, as well as other Primary Care staff, to work with failing seniors and their family members.

Advocating for Dad - anorexia

2009-09-24T06:21:00.000-07:00

anorexia--September 12, 2006

Another book excerpt

It is important to be an advocate and to ask questions on behalf of your loved one. I was unable to function well enough to do so. It haunts me to this day. I was unable to get to speak with the doctor, who I wasn’t sure really knew or understood my father and his care. There was no treatment plan I could perceive. For someone in palliative care, there is a pattern of eventual physical and biological deterioration that is predictable. This must be anticipated, prepared for, and managed.

Dear Brian advocated so much for us. He visited the staff and spoke to the charge nurse, dietitian, and other care staff. Brian had been advocating for Dad’s food preferences. Tania called us from the LTC home that day. I was glad I was there to take the call. I could be replaced at school, but I was Dad’s only daughter and legal advocate nearby. Dad had crawled out of bed and fallen onto his knees. It was their responsibility, according to the Long-Term Care Act, to inform us. I thanked them. They assured us he was fine.

Dad was unable to understand the function of the call help button and would not wait for help. He often had to urinate every fifteen minutes or so. Long-term care was not staffed to allow for a senior to have such a frequent toileting routine. But it is demeaning to lose control of one’s bodily functions. There is a huge struggle to hurriedly get up out of bed and go to the toilet. It was a horrible situation. I still have no answers to this issue, with Ontario government standards limited to three hours’ care per resident per day.

No amount of discussion with the nurses would increase his pain medications to an acceptable level. I kept asking for more pain relief, but I truly did not know what was indicated, still had not spoken to the physician, and was getting tired of fighting.

Since his agitation was so extreme, they had put him on a drug to calm him. I think they said it was Respiridol, but it was intended to take away his pain. He chewed the tablets. I did not know what the drug was made of, nor what it was for. I had not been told what drugs he was on, nor given any indication of his pharmacological treatments. On the web it said this drug is contraindicated for those with dementia. There were risks involved, but it calmed him and I ignored this issue. My brain was full and I had to choose my battles. We were not informed of its intended or regular use. As alternate decision-maker, I would have liked to sit down for a talk with the attending physician, but that was not to be. I later filed a complaint, which I hope made a difference to other residents.

Part One: My Parents’ Final Years

2009-09-23T10:51:00.000-07:00

2002: The Ravages of Old Age

The ravages of age were familiar to me. My elderly aunts and uncles had passed on. Listening to my parents describe aches and pains in their seventies, I had myself realized aches and pains of middle age in my forties. Getting up in the morning could be slower than before. Mom and Dad had fought arthritis, cholesterol, and weight issues since their fifties and were pretty careful with their health. They would work long hours at events in town supporting the volunteer network. They slowed down in their sixties and I began to monitor them more and more during this time. There were clues that their visits to the pharmacist were becoming more serious by the sheer volume of medications they were on. Mom had lactose intolerance and debilitating colitis: a stress-induced diarrhea. She was an extreme worrier, and it resulted in her having to wear adult diapers when driving a long way or going to church or choir practice. The smallest stress would send her off to the toilet. Dad was taking eight pills a day, a polypharmacy situation that put him at great risk.

Mentally I had already looked ahead to the last chapter in my parents’ lives after my first husband’s mother developed lung cancer. She was a heavy smoker, so it was not a surprise. I read all I could at that time and began to understand the philosophy of Elizabeth Kübler–Ross’s five stages of grief: denial, anger, bargaining, depression, and acceptance. I had developed such strong bonds with my mother, I knew we could honour the past while accepting the present. I could foresee that time coming, as my parents began recognizing and showing signs of the aging process. Slowly they began giving up the physical activities they could no longer manage: mowing the lawn, shovelling snow, raking snow off of the roof, stacking the cords of wood they needed for their wood stove, and so on. They began to hire people for those purposes.

Dad found caring for his precious garden much more difficult in his seventies. His knees were ravaged by arthritis, he was in pain, and needed much more sleep.

I, too, was beginning to prepare for the last chapter in my life. I had always been an active member in my teachers’ federation,[1] serving as executive member, secretary, treasurer, and branch president. I enjoyed trying to give something back to my profession. I took student teachers under my wing and mentored them while contributing articles to educational publications and planned and presented workshops on curricula, special education, and technology. Finally, I joined a professional organization (Ontario Association for Supervision in Curriculum--OASCD) and began doing work with this provincial group to help plan workshops and organize conferences. It was exciting work, planning, preparing, and facilitating the professional development opportunities so crucial in the field. I took the principals’ course in order to find new challenges beyond the classroom. It was rewarding work and gave me great joy.

I had been divorced for ten years. This kind of time commitment gave me a purpose, especially as my children found their own friends and their own interests. I was content to carry on with my personal and professional goals. One December, I met a special man. The week we met, we were scheduled to visit Mom in Muskoka. She told me to bring this dear man. Imagine driving five hours in a car with three teenagers. He is not a tall man, and I am not a tall woman. My children are fairly tall, and when we would stop on the way for a bite to eat, we looked like a peculiar family. But the visit was a success. After a busy spring and summer, we became engaged.

Brian, my second husband, is a delightful man. He was in the middle of a successful business career, with much responsibility related to the transportation industry. He has an open heart, a genuinely honest disposition, and is loved by almost all. I adored seeing him take off for work in his business suits. He looked like the businessman he was at the time. His generosity extends from the financial gifts he made to my struggling children while in university, to the generosity of spirit that moves him to do Meals on Wheels in his retirement in this community. My mother always called him “a pet”!

Mom put off her surgery until after our wedding in 2002.

(Terry Hrynyk)

[1] The federation became a union in 1997.

Book signing - Sept. 26

2009-09-21T10:21:00.000-07:00

book
Don't miss my book signing at Gravenhurst Book Store:

Saturday, Sept. 26, 2009, from 2:00 to 4:00 p.m.

Also available at Penny Varney's!
You may balk at the snow in the photo, but it is last year's picture...the only one I had.

Thank you to those who have helped to spread the word. It is important to have information about the health care system from some one who cared for parents.

It is a much different proposition due to access to information laws.

I hope to see many people there. This was a labour of love, and very cathartic.

I learned so much and wanted to put in in print.

Book Introduction

2009-09-20T10:48:00.000-07:00

It is possible to live and die with dignity, but it isn’t always certain. My mother denied to all that she was either ill or in pain. She died at home. My father raged angrily against his brain tumour.

I chose to document this story of caring for my ailing parents, as I could find little in the literature to help me on my journey. To keep ourselves organized, and to keep track of my parents’ appointments, our trips to Toronto, their cancer treatments, and their prognoses, we wrote every appointment on our calendar. Eventually, I created a journal.

Journalling is a highly recommended means by which a writer can come to terms with the events of her life. An autobiography is an excellent way to capture a life well lived.[1] Some new studies have reported the benefits of writing a memoir to come to terms with your own story. There is healing power in such a process.

Dr. Gary Reker’s (2002) work on spirituality and his autobiography, as well as the work done by Pennebaker (2004), convince me that the writing process is a healing one. In Writing to Heal, Pennebaker cites research that demonstrates reduced visits to medical professionals for those who disclose their emotional trauma and try to make sense of it. Writing about one’s emotions is associated with general enhancement of immune function and reduced physiological indicators of stress. His research finds that one’s mood and behaviours change after writing, and that expressive writing can help those dealing with stressed interpersonal relationships. His work gives the reader many ideas about basic writing technique, constructing and editing your story, changing perspective, and experimenting with context. Certainly, when teaching writing to my intermediate students, we found much healing in working through the writing process in fiction, both poetry and prose. Natalie Goldberg’s Writing Down the Bones gives terrific strategies for opening up your mind and helping the words flow off the pen.

I was inspired to write this memoir in order to share my stories with others. These are lessons that I wanted to share. While my parents were fighting for their lives and trying to deal with the vagaries of age, I looked for human and physical resources through the Internet, sought out various counsellors, and contacted the Canadian Cancer Society. I scoured bookstores and found few resources. This book outlines the human and physical resources, the personnel, and the publications I found during my journey; and the frustrations of the bureaucratic process of dealing with health care professionals, long-term care facilities, and even extended family members.

These difficulties were compounded by my own diagnosis of clinical depression. I found during my research that as a woman going through menopause, with symptoms of stress, I was at great risk for depression. I am now receiving hormone therapy, after a saliva test showed that my estrogen levels were low and that my progesterone was minimal. This imbalance, due to surgical menopause in 1995, resulted in menopausal symptoms that included depression.

I worked hard to advocate for my parents, while working full time and caring for my adult children. After facing depression, a year on antidepressants and a focus on healthy eating and daily exercise have me feeling better. Depression is a difficult disorder, as it is unspoken, unnamed, and often undiagnosed. Many things can trigger it, including adolescence, hormonal changes, moving through life passages, a new job, or perceived job stress. I went into a mild depression and sought counselling after my divorce; having been in a marriage of sixteen years, it was a shock. I used the Employee Assistance Program to find someone to talk to about the issues I had been facing. The research says that depression can return with new stressors, such as work pressures, perimenopause, worrying over young or adult children, ailing parents, or bereavement. I have done extensive research on it to understand it better. It was quite a learning experience.

I had a fairly normal family life. Adopted as an infant into a loving working-class family, I had the usual teenage angst. A large amount of my leisure time was spent singing in choirs, attending church, and participating in a close, extended family network with cousins galore. I was always a good student and had no trouble in school. My parents really wanted me to get a good education. They encouraged me to go to university. I pursued a degree in Early Education from Ryerson, married in second year, and graduated pregnant. I earned my B.Ed., and then an M.Ed. Reading, writing, and research have taken up a better part of my life. I have always liked to ask questions.

Here we are: a loving, ’60s family at Robin’s first birthday. He was adopted at two weeks of age. I was adopted when I was six months old in 1957.

My younger brother, Robin, was adopted when he was two weeks old. Robin now lives in British Columbia. He works in Northern Ontario as a miner for two weeks at a time, spending the alternate two weeks on Vancouver Island where he lives with his son. Robin is a big man. Not tall, but a sturdy man of Scots descent. His dark, curly hair usually needs a trim. He is a “go to it” type of person. He works hard as a miner. We never talked much, not until our parents’ ill health, but we love one another.

I was very proud of my mother. She was a very strong and determined woman. Her father died when she was fifteen years old and she dropped out of school to work and supplement the family income. Old photos reveal a beautiful young woman, especially the old, old black and white photos dating from 1940--obviously taken when she and Dad were courting. She worked and played hard all of her life. At the age of fifty, she learned to use a computer in her office. For twenty-seven years she managed a Rotary Club of 500 members with aplomb and panache. She was one of my best friends, despite living in separate cities. She listened to me and gave me unconditional support. We spoke every few days.

I did not talk to Dad very much. In his later years, he couldn’t hear me on the phone. A strong, silent type, with many tools and a well-appointed workbench, he always had a project on the go and seemed to be able to fix anything. He loved his plants, his goldfish pond, his pets, and his lovely waterfront home. In my youth, he and Mom attended every track and field meet, every concert, and every other important event in my life. I always felt loved unconditionally and totally supported all my life. My parents were always there for me. I suffered little, other than having a huge lack of self-confidence.

We were a busy family that lived in the bustling inner city. I grew up taking the subway everywhere. Summers were spent in marvellous Muskoka. I adored the lake, the water, and the wind. We built a cottage, which still stands nestled in the trees by the lake. Dad loved his cottage. In the summer he would leave early on a Monday morning to nip into the busy city, and we would meet him at the highway when he returned on Friday nights for the weekend. In 1991, Mom finally retired after Dad had lost a series of jobs in the construction bust of the eighties. They were both sixty-six years old.

[1] See www.jilks.com/articles/AutobiographyTherapy.htm.

Press Kit

2009-07-23T06:58:00.000-07:00

Jennifer A. Jilks
B.A., B. Ed., M.Ed.
Living and Dying With Dignity: A daughter’s journey through Long-Term Care

Biography
Jennifer Jilks, retired teacher and educational writer, moved to Muskoka to care for her failing parents. Her intent: to write a book about teaching. Leaving behind friends, family and support systems, she was forced to retire early due to caregiver stress, depression and burn-out. Rather than the book about teaching, she participated in helping her parents navigate through end-of-life issues and wrote of her journey helping her parents die with dignity.

Her mother died at home from cancer, and her father from a brain tumour while in Long-Term Care. Part memoir, part research, the book includes coping strategies, and information discovered about the maze of Ontario Health Care options. Living and Dying With Dignity follows her parents’ journey, carefully explaining what happens after the diagnosis of cancer. Many have written success stories, but how do you cope when cancer or a brain tumour returns, when juggling as an adult child and a caregiver? What are your rights?

Author of many educational publications, and a school teacher from grades JK to 8, with workshop presentations ranging from Internet Safety, Web Design for Students, Integrating Technology for Exceptional Students, Jennifer has turned these skills towards adults.

Her work with the young has been transferred to working with older adults as a Peer Health Educator with the Cardiovascular Health Awareness Program, a Consultant with the Provincial Aging at Home Strategy, and a blogger: ontarioseniors.blogspot.com

The book’s first section is a memoir, which deals with the emotions of relocating, finding care and suitable supports for her parents. The second section is a research-based section with helpful advice. Since the senior generation are often reluctant to ask questions, and people often don’t know which ones to ask, this book includes information about your rights as a patient, i.e., treatment plans, discharge options, and questions to ask your oncologist. You have a right to know treatments, treatment symptoms, options, and quality of life issues. There are many barriers to getting health care in Canada.

Suggested interview questions

Tell me why you were inspired to write this book?
When did you realize that your father was as ill as your mother?
How is a caregiver’s health impacted by the work demanded of caregiving?
What is happening to the sandwich generation as aging parents demand and require major support?
What are the most important lessons you learned while caring for your parents?
The Ontario government has been spending money in areas such as new Nurse Practitioners, Aging at Home Projects and Family Health Care Teams. Do you think these solutions are working?
Many caregivers are facing ill-health, as you suffered from depression. What advice do you give to caregivers?
What recommendations do you have for the government?
What is the difference between Long-Term Care and Retirement Homes?
Why is it so important to identify the symptoms of dementia and/or delirium early on in the process?
What questions should patients ask of their physicians and oncologists?
The final section of your book contains important conclusions about senior health care and reflects on some of these initiatives. What are some of these ideas?

Information about aging in Ontario

With an aging senior population, Canada has few geriatricians. Typically, Family Physicians are untrained in geriatrics.
Those who work with seniors do not necessarily have training. Personal Support Workers (PSWs), who do most of the work in LTC and Retirement homes may have only a 14-module training course. They need to be regulated and monitored as do those who work with young children.
Many family members do not know how to access services. Many are as ill as their family members. Many seniors are themselves caring for ailing seniors, with little access to home care (4 hours per day in Ontario).
Hospitals are places for those with acute illnesses. They do not deal well with those who are frail. As a caregiver, expect that you will be of benefit to them if you are present at their bedside. There is much to do. It is important to advocate for them; record treatment plans, medications, test results. Be proactive. Ask Why, How often and How much? With 3 new medications, seniors are at high risk for complications. About 50% of those with dementia are at home. Two-thirds of these remain undiagnosed. Dementia, often confused with delirium, is under diagnosed in many seniors; both are treatable and can be ameliorated.
It is estimated that dementia is present in 23% of seniors aged 85-89, 40% of seniors aged 90-94, 55% of seniors aged 95-99, and 85% of seniors aged 100-106.
Advice for caregivers and family members
Go to doctor’s appointments with your family members.
Be prepared with questions about treatment plans, treatment side effects, the impact of treatment on one’s quality of life, as well as survival rates from the treatments.
Keep a medical diary of symptoms and treatments and take notes.
Understand the difference between dementia and delirium.
Balance your social and emotional needs with those of your parents.
Caregivers must act in the interest of safety in terms of health, nutrition, and access to the wheel. It is estimated that 20% of dementia patients are still driving.

Barriers to health care

Lack of patient advocates, like the Alzheimer’s Society FirstLink.
Geographical inequities across the province.
Transportation
Lack of qualified personnel from geriatricians, nurses, to PSWs.
Health care relies on unqualified community supports: churches, neighbours, rather than hospice volunteers, and PWSs.
Ailing spouses may be unable to provide adequate care resulting in Elder Neglect and Abuse. This can be prevented or ameliorated with CCAC intervention.
Myths around pain and pain management
Family issues - dysfunctional families
Communication deficiencies or disorders: language barriers, auditory, visual, cognitive disorders
Denial of health issues by seniors, family and friends
Bias or prejudice - i.e., inaccurate statistics: women die of stroke and heart disease
Fears - of diagnosis or treatment
Patients who do not speak English
Poor or ineffective treatment plans
Cognitive disorders - delirium, dementia,
Mental health issues
Mistakes in diagnosis
Attitudes: i.e., discrimination, being treated as incompetent, expressive or receptive language disorders
Primary Care workers who speak down to patients, or use acronyms, or complicated language
Wait times, lack of staffing, crowded hospitals where seniors do not have enough support, are immobile, and may not get all the nutrition they need.

Recommendations for the government
We need more geriatricians. End-of-life is a much more complex stage of life than pediatrics. Every Primary Care staff member needs training in geriatrics from the physician or nurse to the PSW.
We are short-staffed in Primary Care
Delivery of Health Care in Central & Northern Ontario requires as infusion of money and beds, not less.
Regulation and Registry of PSWs. In profit and non-profit care we allow personal support workers to provide intimate care to loved ones. To work in Day Care you need an ECE degree, yet PSWs may or may not have a certificate from a college. This must be changed.
Patient Advocates. Each senior should have a patient advocate to support the entire family, not just the patient.

Resume
Special Education teacher for over 25 years.
Wife, mother of 3 adult children, one granddaughter
Board of Directors member for FYCSM.ca
Workshop presenter to elementary, university and adults
Internet expert and published author on education, web design and internet safety.
Consultant with the North Simcoe-Muskoka LHIN’s Aging at Home Project
Trained Hospice volunteer
Trained Volunteer Crisis Responder
Peer Health Educator with CHAP -www.chapprogram.ca

questions about book content

2009-04-22T08:28:00.000-07:00

Jennifer Jilks is a local author, retired educator, and writer. We had lunch and talked about her book, and her work in the field of geriatrics.

Jennifer, tell me why you were inspired to write this book?

I gave up a great job and career in Ottawa, having lived and worked there for twenty-five years, to move to Muskoka and provide care for my failing parents. They were both fighting cancer. I felt helpless, as I juggled the responsibilities of motherhood and caring for ailing parents. I know I am not alone in this situation. Many caregivers are adult daughters who sacrifice their careers, and juggle their lives meeting the needs of aging parents. I did a great deal of research and wanted to share the lessons learned.

When did you realize that your father was as ill as your mother?

My father’s brain tumour was diagnosed in 2003 after a grand-mal seizure. He, too, had surgery and was sent home. He had mobility issues, his arthritis compounded the effects of the brain tumour. When I visited my parents in March break, I realized that they were both going downhill. I know Dad exhibited signs of delirium. Mind you, I didn’t know what dementia was, and at the time I did not realize the significance or the difference between dementia and delirium.

What is the most important lesson you learned while caring for your parents?

My mother was adamant about going to appointments alone, and this was a huge mistake on my part. She did not hear well, she was ill fighting cancer, and did not comprehend some of the terminology. Mom was unable to advocate for herself: asking questions about treatment plans, treatment side effects, the impact of treatment on her quality of life, as well as survival rates from the treatments. At the time, I was as unfamiliar with the health care system as she was, and neither of us knew our rights to having this kind of information. While I kept a medical diary of her symptoms and treatments, I should have been adamant about attending appointments with her and assisting her in getting all of the information, and taking notes. She was afraid to ask questions and all she knew was what she had heard from friends, the media and what the oncologists chose to tell her.

The final section of your book contains important conclusions about senior health care. What is your most important idea?

Firstly, that since we regulate those who work with children we really ought to regulate all those who work with seniors, as well. There is much we know about geriatrics, a much more complex stage of life than pediatrics. In profit and non-profit care we allow personal support workers (PSW) to provide intimate care to loved ones. To work in Day Care you need an ECE degree, yet PSWs may or may not have a certificate from a college. This must be changed.

Happy BIrthday Mom

2009-04-04T13:55:00.000-07:00

What is your favourite food?

For my mom it was potato salad. When she was dying, she asked for it. I was too stressed to figure out how to make it because the myth was that only my grandma made it right!

The local deli, despite it NOT being tourist season, made some specially for us. I was so grateful. I drove over and picked some up after work. She ate a tablespoon, but it was something I accomplished for her. She did not want to accept help. It was difficult for her - she'd given to others all her life. She identified herself by this.

Today would have been her 84th birthday. I wrote her a poem:

Colours of your love

Live~Love~Laugh

2009-03-29T09:27:00.000-07:00

I do not often cross post. This time I will! Great things are going on in Muskoka.

With great delight I attended a day-long session for hospice volunteers Live~Love~Laugh - a workshop for hard-working volunteers.... I am taking the Foundations of Palliative Care course and this is the training all of these volunteers fo through. It is am amazing course. We know so much about managing death and the dying process. The day was such a positive experience for all the volunteers who attended. It is primarily women, who tend to be the caregivers, but there are a few male volunteers.

Many volunteered to set up tables, and create beautiful displays of, for example, the door prizes.

The keynote speaker in the morning was Jane Galbraith-author of Baby Boomers Face Grief. Jane is a nurse and a medical consultant, who is giving workshops on managing grief in middle age. While she no longer does bedside nursing, Jane does medical legal expert nursing opinion consulting, and also sits on the CPP Disability Tribunals as a medical member.

Many of us are not familiar with the grieving process. I have found, in my research, that in this the sandwich generation, it is tough managing careers and caring for ailing parents. Once they pass over, our work begins. And work it is. Her book is a good read for those of us who face bereavement at this stage of life. It is a process that has a terrible impact even if it is a 'good' death, or an anticipated one. My father, we knew, was palliative but this does not make it easier. In the case of a sudden death of a parent, we are suddenly orphans in a strange way it is a passage for which we are not prepared.

It was so much fun, since I was able to trade books with the other authors who were there! Muskoka is full of authors and workshops faciliatators.

In addition to Jane, Elke Scholtz was there to lead a workshop on Loving Your Life. She does creative workshops on this topic and is working on her Master's using expressive arts. We know that such therapy does wonders for all of us at all ages. I eagerly look forward to reading her book!

I cannot thank the volunteers enough for preparing us a delicious soup and sandwich lunch. The decorations were beautiful on all the tables. I truly felt welcomed and appreciated. The conversations I had with participants, as well as presenters, helped me see the caring, loving individuals with which we are blessed in this community.

One of the fun things was performance by the Bracebridge U.C. Bellringers. I caught a photo of the press getting photos! How wonderful to be honoured with their delightful music.

radio interview

2009-03-16T05:56:00.000-07:00

On Monday I had an interview with CFRA Ottawa regarding my book. It will air Monday, March 23. The book can be ordered in by any bookstore, or check out GSPH, my publisher.

I taped myself in 3 parts:

580 CFRA News Talk Radio

On Target Ottawa, is an information hour hosted by Shelley McLean between 5 and 6am. Shelley has the news headlines, entertainment and health news, ...
www.cfra.com/schedule/info.asp?id=21

Bell Telephone

2009-02-11T10:58:00.000-08:00

For anyone who has ever has to deal with Bell will understand that under normal circumstances: moving into a new home, not having service installed in good time is a big worry. There are many issues to resolve. We missed Bell by 20 minutes (the buyer do not get the key to our lawyer in time) the last time we moved and do not have service for 2 more weeks. With a hundred things to do it is no fun. Dealing with Bell in my situation is terribly frustrating. I cannot phone at home, as I leave the house early (7:00 a.m.) and do not arrive home from work until after Bell closed.

To explain where I am living is hard – as it is a cottage off of the house. It said that there is service here already. That takes some explaining. Then, I have to phone from school, during limited break times, in between yard duties, and there isn’t a lot of time to sit on the phone waiting for Emily, Bell Telephone’s infuriating robot, to send me to the right person. It is a relief to be able to talk to my husband when I wanted to!

What was terrible is trying to cancel or change services for my late mother, and my father, with dementia, when he moved to a Retirement Home and then LTC. The frustrations are endless. I simply ended up pretending to be my mother, at one point. I had Power of Attorney and Dad was beyond talking to Bell. I wouldn't put him through that.

Work stress . . . depression

2009-02-10T06:26:00.000-08:00

--Sunday, September 17, 2006

Bullying in the workplace is an issue facing an increasing number of workers (Bredeson, 2003). It is a major cause of physical, emotional, and psychological issues for employees and exacerbates an already demanding emotional burden on the part of a caregiver like myself. In a familiar pattern of emotional abuse, I received an e-mail from my principal pointing out more mistakes that I had made at school; things forgotten, things she needed me to change or fix. I knew I was not working at my best and I realized that I could not face this work situation. It was intolerable. My father had to come first.

When we have stress it is like filling a glass with liquid. Each time a stressful incident occurs, a little more is added until it fills us up and we soon overflow. This is what depression does to us. We develop inertia and cannot tackle anything that needs doing. Despite needing to complete numerous tasks, we cannot fight the inertia. Fear of failure secures our feet to the ground. I felt threatened as I perceived that my boss was questioning my methods, my beliefs, my timetable, my work with the special needs students, and my commitment to her school, her students, and her community. I was physically, socially, and emotionally exhausted and felt defeated. I realized that I could no longer face her anymore with my increasing self-doubts reinforced by her critical eye. In my readings, I had found that those who were depressed faced increasingly low levels of self-esteem. People like me, who were juggling home and work, despite having previously achieved success, sustain high levels of self-doubt.

I read an article, published in our local paper, that related loss and bereavement issues to a loss of self-esteem. It was an article published by The Caregiver’s Support Network, which was partnered with our local Hospice Group. If only I had known that they existed! They abound in Canada, but I was unaware of this and unable to seek help. I thought I had to do it all on my own.

I tried to be tough. I tried to shoulder a burden that was unsustainable. Daily I questioned myself, as a wife, daughter, and teacher. I was having doubts about my teaching ability and my purpose in life. I knew Dad wouldn’t last too much longer, and wondered what I would do with my life then. This article talked about setting realistic goals. I had not been able to do so. They talked about a sense of fear, which indeed I possessed. I wondered if I was good enough to do the job I had been assigned. I could not make decisions daily and juggle thousands of lesson plans; I was unable to decide what to teach--or, more to the point, what not to teach. Ontario Ministry curriculum expectations are so great that educators have a hard time meeting them all, while integrating learning, focusing on the big picture, connecting learning to students’ personal and community life, and all the while differentiating curricula for special needs students. Our two-week fixation on the camping trip left little time to establish routines, set up classroom expectations, and dig into the multi-layered literacy, numeracy, history, and geography units buried in our textbooks. We were interrupted more than daily for bulletins, important assemblies, PA announcements, and changes in plan. It was unnerving.

For me, just getting dressed in the morning involved decisions I was unable to make without forcing myself to keep moving. The article went on to say that low self-esteem could manifest itself by complicating the grieving process. I was grieving my mother, and the father whom I used to know, at the same time. This kind of stress could result in substance abuse, risk-taking, thoughts about risk-taking, suicidal ideations, negative mind chatter, fear of new situations, and distancing oneself from family and friends. I checked positive for all of these symptoms.

I spoke with an absence management representative at the board office. I told her all that had gone on in my life. She suggested I go back to the Employee Assistance Program (EAP), despite my failure to find an adequate counsellor last June. (I spoke once to a counsellor on the phone, and she suggested, after forty minutes, that I really didn’t need to talk to her again.) My contact promised she would speak directly to her contact with the EAP Management group. I was glad I had reached out. She advocated for me and ensured that I spoke to someone who would guarantee that I had an experienced counsellor who would guide me through this chapter in my life. What a blessed relief.

I began to see this counsellor weekly. He helped me work my way through the issues that I was juggling. He complimented me on how well I was handling the stress. I had lost all perspective. I laughed a great deal and tried to step back to look at some situations with amusement. This made life endurable. He assured me, after I told him my previous experience with counselling, that I would not be left high and dry this time. I had lost my peer support system and social network by moving away from friends. I felt so much better; now I had someone in my court other than my beleaguered husband and my children, from whom I had unconditional support. As I talked through my issues, I began to realize that my priority had to be me and my dad.

My father required increasing amounts of support from us. While the Ontario government has a plan whereby employees could take six weeks off from work to care for a family member in palliative care, it is leave without pay, and would cost me pension dollars. I had taken time off work before beginning my teaching career, and had little enough pension as it was. The penalties for a shortened career due to child-bearing profoundly impact mothers in their retirement years. In addition, one needs a letter from the doctor stating that the patient has less than six months to live. How could a doctor predict this?

With Dad’s ill health and current deterioration rate, I thought that maybe he might have had two weeks left, but it was hard to tell. I had little choice but to take some sick leave now to try to look after my dad and myself. I had to call in sick. I was determined not to let my work determine or limit my ability to care for my father. I would never regret the decision to move to Muskoka.

Until now, I had enjoyed going to work. It took me away from my concerns. It helped me keep life in focus, as opposed to peering into the valley of the shadow of death. I felt that I had much to offer with my background and experiences in dealing with many types of students of varying abilities, disabilities, learning styles, races, colours, and creeds.

My mental health was the most important issue right now. I was truly suffering from a difficult work situation: a new school, new boss, and new culture. My students were delightful; my colleagues had remained supportive and understanding. They lauded me in my efforts. They listened and helped. But despite this support, I could not face work anymore. I felt devalued and unrecognized. I had had enough. I felt very strongly that God had something else in mind for me.

I decided to give up my career and my teaching practice. I held fast to my faith, determined to retire as soon as was possible in December when I turned fifty. As I drove past each school, with a schoolyard filled with laughing children, and school buses motoring on down the road, the regret at ending my career left me feeling like a failure. The shadows loomed in the dusk as I faced my demons.

Brian continued to go in and feed Dad breakfast, while I tried to heal myself and “look after me.” This was the advice many, many people had given me based on their own experiences. I had always agreed with the flight attendant’s advice: to demand that mothers put the oxygen mask on themselves first, and then their children. I was drained of energy. I found it difficult to begin any tasks, let alone finish them.

We were slowly getting the house in order; it began to resemble a home. I found solace in cooking and going back to being the homemaker I once was when my children were in their early childhood years. I began nesting. I told my counsellor that I wanted to hibernate for the winter. I wanted to cocoon, eat better, drink less, exercise more, and get myself back in shape.

After each afternoon visit with my father, I came home either numb or in shock. We would often go out to dinner, as preparing a meal was beyond us. At times I had an immense sense of gratitude for living in this beautiful place and surrounded by nature (tourists having gone home for the winter). At other times I did not know how to manage my new reality: that of homemaker/caregiver. I ate a lot to keep my hands busy, and drank just enough to be able to sleep. One glass of wine would lead to another until I could not feel the pain anymore. Something would give if I did not stop and take it easy.

Old dreams die hard. I had given up the notion of being a principal here in Muskoka. I realized that once retired, I could not go back to delivering workshops, either. They want current practitioners to deliver workshops. I could not do so. Finally, we had found a good doctor. He worked in a practice with a drop-in clinic and, while I had put off looking after myself, he seemed to be able to help me. He asked me several questions and came to the conclusion that I was clinically depressed. Basically, my neurotransmitters were not firing properly, and it was the fight or flight response to my stress that had sent me off into a tailspin.

I could not go on this way, worrying about school, my father, and our new home. My physician prescribed anti-depressants. I was not sure what they would do to me-- many drugs have side effects--but I knew there was something wrong and agreed to take the drugs. The first lot gave me headaches. I could not abide the headaches. I knew one had to start them slowly with a half dose, but I also knew there was something wrong with me that I could not fix with sleeping pills, exercise, or relaxation tapes. The prescription cost $117. Thank goodness for my drug plan!

My doctor gave me a medical note to stay off work for a month. I felt incredibly sad, but quite relieved. I could not live with the workplace stress and the angst I felt at having to face my principal feeling like a failure. I could retire in December at the age of fifty with an early retirement penalty and a huge reduction in my income. I believed that my mental health and my ailing dad were worth more than just money. I filed the papers. As the old ad said, “I am worth it.” I had 130 sick days that I had brought with me from Ottawa, and did not have a history of being ill. It was time to use those days. This past year had sent me over the edge. I was travelling at top speed down a slippery slope, headed towards disaster. My teaching career was over. It was a hard life passage to face.

book availability

2009-02-07T12:03:00.000-08:00

I am so excited. I donated books to hospices, libraries, senior centres, senior advocacy groups, and local hospitals.

But it was with great excitement that I went to our local library, in Port Carling, one of My Town Monday posts, to see the book featured on the shelf.

A friend in LTC has been passing some on. A friend of hers said she, "couldn't put it down!", which is great to hear! A memoir is a difficult thing to write. You try not to be too sappy, especially with this topic, or to depressed, despite being on anti-depressants at the time. I loaded it with humour, since "laughter is the best medicine" and we laughed at our antics, and my dad's, all the time.

I did so much research, and included a glossary and acronyms page to help those in similar circumstances. For those going through the health care system, this will help them navigate. Another target audience: those working with seniors at home or in institutions, or those in palliative care. Students in the various industries would benefit from a family member's point of view of the health care system. My main target was family members in similar situations, however.

in stores now!

2009-01-01T07:52:00.000-08:00

Here is a great photo, taken by my husband, of us: Penny & Jenny!

Despite the stress of the season, and a downturn in the economy and a slow summer for tourism, two local stores have been kind enough to take in consignment copies of my book.

Any book store can order the book in for customers, as well. My close family friend in Kingston is ordering the book, and has offered to host us if we go for a book signing!

While I will never make money on this book, I am glad that they are helping me spread the word about caring for ailing parents, caregiver stress, and Health Care patients who need a navigator.

I wanted to put out the information I learned from researching the issues I faced helping my parents navigate their way through ill-health to palliative care. Many have expressed an interest in reading my perspective.

I love Penny Varney's store in Gravenhurst. She carries a fair number of her own beautiful jewelry, as well as unique works from other artisans in the area. Penny is a wonderful member of the community. She participates in all aspects of the business community, as well as working hard to help close friends. She regularly donates her work to various groups and causes. I met her while singing in The Cellar Singers.

Right next door is The Book Store, where you can also find my book! It is so exciting launching this project. I can't wait for mt first book signing. I guess I will have to, though, as many of our neighbours have gone south for the winter!

I have been blogging about it. Sending information to family and friends. I have offered copies to local libraries, hospices, hospitals, and have had a great response. Those for whom I have offered a 'review copy' have been kind enough to purchase it to help me out. I printed 1500 copies.

The Book is out!

2008-12-08T04:13:00.000-08:00

It is with great excitement that I drove to Ottawa (from Muskoka, where I live). It was a two-fold purposeful trip.

Firstly, it was my granddaughter's first birthday and we had a party.

Secondly, to pick up 200 copies of my book!

Both of us are happy girls!

It was fun seeing the generations together. I often feel the presence of my mother and know that she looks down on us with love. She was so proud of her granddaughter, Caitlin, and would have loved Josephine so much.

They say that one should deal with strong emotional events by writing it down. I found it helps so much. I can look back on my story of caring for ailing parents with much more clarity.

The big book launch will be in February, but for now I am selling them from my car!

There are some new studies that have found the benefits of writing a memoir to come to terms with your own story. There is healing power in such a process. Dr. Gary Reker's work on spirituality and autobiography interests me, as well as the work done by Pennebaker, convince me that the writing process is a healing one.

"We are healed of a suffering only by expressing it to the full." -Marcel Proust, novelist (1871-1922)

Cover Page possibilities

2008-09-17T08:56:00.000-07:00

I am trying to make a final decision on the cover of my book. Any thoughts? It is a diary and then provides research-based information on health care (and death & dying) in Ontario, specifically resources for family members who become Alternate Decision-makers.

From my strong, tall father, who could repair, fix or build anything, he lost the ability to figure out the function of things. He bitterly fought using a walker, eventually was in a wheel chair. He tried to get out of it all the time. We had to restrain him as he would be a danger to himself.

The tumour affected his balance.

He was unable to drink easily at the end. I would have to hold the cup for him, if he could not manage two-handed.

I loved dad's hands. They reflected his age and experiences, which make us all more beautiful human beings.

Glossary of terms

2008-08-22T07:37:00.000-07:00

This list is found in the back of my book.

Activities of Daily Living (ADL)--bathing, grooming, toileting, dressing, eating, and other activities necessary for daily living and survival

Agnosia--failure to recognize objects

Aphasia--a disturbance in receptive or expressive language

Apnea--temporary cessations in breathing; this is a sign of approaching death in palliative care patients

Apraxia--loss of understanding of the uses of things

Assistive device--a mechanical aid to make ADL easier

Benign brain tumour--a slow-growing tumour that does not tend to invade nearby cells

Biopsychosocial issues--interrelated biological, psychological, and sociological issues

Carcinogen--a substance that has been proven to cause cancer in living cells

Caregiver--one who provides care

Care recipient--one who receives care

Comorbidities--the effect of all disorders or diseases on an individual in addition to the primary health issue

Dementia--an acquired, persistent impairment in two or more cognitive areas of executive functions; profound mental incapacity

Delirium--• Disturbance of consciousness

• Disorientation, wandering attention, confusion, hallucinations

Dysphagia--choking and swallowing issues

Executive functions--planning, organizing, sequencing, and abstract thought

Frail--premorbid: at risk for biopsychosocial issues; inability to manage physical, social, and emotional needs (ADL)

Geriatric--of or relating to old age or old people

Independent Activities of Daily Living (IADL)--caring for pets and dependents; communicating with others effectively; managing finances and health; doing housework, meal preparation, and cleanup; looking after transportation and safety procedures

Infarct--a small, localized area of dead tissue caused by an inadequate blood supply; can result from blood clots or diabetes

Incontinence--inability to control evacuation of urine or feces

Long-term care (LTC) facility/home--a health care facility for those with physical disabilities that offers 24/7 nursing staff; formerly called a nursing home

Malignant brain tumour--a tumour that grows quickly and invades surrounding cells; these kinds of tumours are the least likely to be totally removed surgically, since they invade and damage important structures

Metastasize--when cancer cells break off from the original site and spread to other parts of the body to cause malignancy there

Morbidity--the quality of disease; the extent of illness, injury, or disability in a defined population

Nurse practitioner--a nurse who meets primary health care needs, conducts physical examinations, selects treatment plans, and identifies medication requirements

Nursing home--now called a long-term care home; differs from a retirement home

Orphan patient--a person without a family physician

Palliative care--giving care at the last stages of life

Polypharmacy--taking too many pharmaceuticals/prescription drugs

Premorbidities--factors that may lead to death

Primary care--basic or general health care from the medical system

Registered nurse (RN)--a nurse who is licensed to practise and is a registered member of a nurses’ association

Registered practical nurse (RPN)--a person who is registered by a professional association of nurses as having been trained to perform basic nursing tasks under the direction of a physician or an RN.

Respite care--temporary institutional or home care of a dependent ill or handicapped person to give respite to the usual caregiver

Retirement home--a private residence for seniors (profit or non-profit); governed by the Landlord Tenant Act

Sleep apnea--intermittent failure to breathe during sleep

Subcortical issues--issues such as plaque and damaged brain cells; physical evidence manifests as dementia

Supportive living--also called assisted living, in which supports are on call 24/7

Acronyms related to aging

2008-08-22T07:32:00.000-07:00

Acronyms--Senior Care

ADL Activities of Daily Living

ADP Assistive Devices Program

ALC Alternate Level of Care (hospital designation)

CAT Scan
CT Scan Computerized Axial Tomography (takes x-rays of the brain)

CCAC Community Care Access Center

CCC Complex Continuing Care

CHC Community Health Centres

ED Emergency Department

ER Emergency Room

FHT Family Health Team (now mandated across the province in Ontario)

FIPPA Freedom of Information and Protection of Privacy Act

HHR Human Health Resources

HSP Health Service Plan

IHSP Integrated Health Service Plan

IADL Instrumental Activities of Daily Living

ICE Isolated Community Experience (to serve seniors in rural areas)

IGS Integrated Geriatric Systems

LHIN Local Health Integration Network

LTC Long-Term Care

MIS Management Information System

MLAA Ministry LHIN Articulation Agreement (data collection)

MOHLTC Ministry of Health & Long-Term Care (Ontario)

MRI Magnetic Resonance Imaging (MRI Scan uses a magnet and radio waves to take pictures of the brain. It provides more detail than a CAT scan.)

NSM North Simcoe Muskoka

OCSA Ontario Community Support Association

PACE Program of All-inclusive Care for the Elderly

PASD Personal Services Assistance Device

PEC Public Education Coordinator

PHIPA Personal Health Information Protection Act

PRC Psychogeriatric Resource Consultant

PSW Personal Support Worker

RAI Resident Assessment Instrument (used in home care and palliative care)

RGP Regional Geriatric Program

RISC Regional Integrated Senior Centre

SGS Specialized Geriatric Services

TPO Transfer Payment Organization (governments have been outsourcing health care to various agencies, transferring money to them. They are governed by boards of directors.)

Recovery from Depression and Stress

2008-01-28T11:26:00.000-08:00

As I recover from depression and grief, I continue to seek solace in nature. After giving up my career, my Ottawa home and garden, familiar colleagues, my old city life, and my parents, I take it slowly. Walking heals me. Today it was glorious out walking in the dusk. I kept an eye out for the wolf that appeared last week when Brian was speaking on the phone to Caitlin, my daughter, while I was out at work. He was gazing out the window while he talked and stopped mid-sentence, awed by the sight as it hustled by. I think it was looking for our turkey vultures that visit our feeders--it was the cycle of life. You could see its footprint in the snow as it trekked across the lake. The colours, the shades and shadows, as well as the creatures that continue to survive in the minus double-digit temperatures always stirred me.
This morning, the blue jays were puffed up for warmth. I had filled the feeders last night--I knew it would be a cold night, ten degrees below zero or even less, and they would be hungry. I counted five jays negotiating for a spot at the feeder. The squirrels, in that endless hide-and-seek game, had wee faces covered in snow as they doggy-dug trying to first bury and then find sunflower seeds or peanuts. They were a hungry lot today, and I may give them all a second sympathy feed. The rest of us were on diets, but we don’t have to live outdoors. I was glad for no yard duty anymore. Supervising inadequately dressed teens, hell-bent on jockeying for yard position, was no fun. I spend longer outdoors now, but it is my choice and I can move around, take photos, and explore nature.
I am so glad to be on the upturn emotionally. I still find it hard being in large groups. The winter was passing, and spring would come, just as it had for the previous fifty years of my life! I endeavour to get out every day to walk or do other outdoor activities. The Vitamin D is necessary for us old folks. I have been off meds for long enough to know that I don’t need them right now, but I know that my doctor is there if I need him, and he is happy with my progress. Quitting antidepressants too quickly or suddenly can result in setbacks.
I had worked hard at doing my M.A. coursework: research to help me navigate through the past few years of depression and stress. I feel that I have made many gains. There have been days when I felt sad and tired, and re-experienced some of the warning signs of depression (sadness, anger, fatigue, inability to make a decision, and insomnia), but they are less frequent. When I recognize the warning signs, I make sure I work out more, get outside in the sun, take time for me, do something for myself, and it passes. What a relief.

In the spring, Caitlin and Jean-Luc brought our granddaughter for a visit. She was thriving in the joy and love of a wonderful home. We visit lots with Jesse, who lives the closest, in Toronto. I regularly communicate with Terry, too, and he visits from time to time. All have been grieving the loss of their grandparents. We often speak of the fond memories that we hold dear: trips to the cottage and trips to town; tons of photos and slides are on hand.

Conclusions

2008-01-10T06:41:00.000-08:00

Whether our seniors require eldercare in the home or in long-term care, there are many issues that create barriers to success. If we keep our seniors at home, they are happier, and often healthier, but more at risk psychologically, socially, physically, and emotionally. Caregivers themselves run the risk of burnout, with its attendant physical and psychological effects. Some profit and non-profit agencies provide respite or day-away programs for senior care. This alleviates the burden of providing the quality of care that our seniors deserve. In many cases, however, if outside agencies are accessed to recruit home care, we run the risk of hiring people who are untrained and unlicensed in caring for those with complex morbidities, exacerbated by complications of complex prescriptions, physiotherapies, emotional complications of dementia, or other biopsychosocial issues.

The difficulty with parenting has been that many parents have passed through a laissez-faire phase in which the child was allowed to flourish and thrive. I remember in Grade 7 we were to self-select learning activities, with little direct guidance from the classroom teacher. I learned very little in that class and became frustrated. This philosophy of parenting had to be changed; many books were published to teach us how to say no to our children. Rabbi Shmuley Boteach offers a show called Shalom in the Home. He is re-educating parents in how to be fair and firm. He is teaching parents to give unconditional love with the right hand and discipline with the left. Both are necessary.

In my experiences with family and friends, I have heard endless stories of adult children who are unable to say no to frail and ailing parents. It is a reversal. Adult children have to lie and deny in an attempt to protect themselves from their parents’ wrath.

Frail adults refuse the help of outside agencies, whether or not money is an issue. It is the less frail spouse who suffers. One fifty-year-old daughter, whose mother had survived breast cancer in her seventies, is trying to persuade her father to allow people to come in to help them. When he falls, the mother cannot pick him up. The mother is now fighting high blood pressure with the stress of caring for this ill man. Tough love is a concept that must be applied to adults as well as children. In this situation, it should not be up to one spouse to refuse care if family members determine that there is a need.

One family, whose father lived in the family farmhouse as he had as a boy, promised their father that his stay in the long-term care home would only last a month. They are now using more excuses to keep him in. He doesn’t like his roommate, who turns up the TV too loud, and is fighting to keep his old life. Frail and ailing adults deny that they are unable to stay in their homes; they experience falls and break limbs, which land them in an LTC home. As seniors, we must make adult choices or we will not be treated as adults.

Our favourite librarian, Mari, who kindly delivered books to my mother, told me that she tried to persuade my mother to get some help with ADL. She offered to put my parents on the Meals on Wheels program, which my father and my husband delivered. Mom would not buy into any of this. Only old, sick people needed home support!

grief, bereavement, mourning

2007-11-15T07:41:00.000-08:00

Grief & Grieving

It is said that we can demonstrate that we loved well by expressing our grief. We must model the grieving process for our children.
I heard about a terrific book the other day. It was featured on Oprah. It is called, Broken Open, and refers to the process of dealing with Bad Things That Happen to Good People or Overcoming Life's Disappointments - a familiar concept.

Elizabeth Lesser, the author, purports that this is the time to ask yourself:

what can I learn from this process?
what is this experience supposed to teach me?

Grieving is difficult. It is unique in terms of time, process, product for each individual. It proves the theory Friedrich Nietzsche Quotes: "What doesn't kill us makes us stronger."

One of the things I learned is that Hospices can and do provide bereavement groups. They train volunteers to support one another. These are people with real life experiences that have led them to move through their grief and make the choice between denial or acceptance, anger or acceptance, bargaining or initiative*.

What do you do and where do you go?
You can seek help from many sources: Victim Services in Ontario, funded by the Attorney General's office, provide sources of support. There are many non-profit sources for counselling and therapy. It is in talking and, for me, writing about your process, that will lead you to come out of the other side healthy and whole.

Rabi Kula suggests that we must grieve with our head, heart and hands.
Head: by learning all we can, reading about bereavement issues, after the mourning process is over. We can use our hearts by expressing gratitude, and accepting the support of others. We use our hands by reaching out to others and giving them the kind of support we had, or wished we had at the time.

Finding others who have had your experiences truly helps. There are many caregiver groups where you will find a home while you are pregrieving and providing care.

I went to nature, the arts, and read and wrote all I could on the topics that interested me. You can seek spiritual guidance from organized religions, many will provide support whether or not you are a member.

~~~~~~~~~~~~~~~
*See Kubler-Ross' 5 Stages of grief:

Healing and the Grieving Process

2007-10-19T11:24:00.000-07:00

The work I had done at my father’s LTC home had been noticed, and I was asked to participate in the Aging at Home Project. Each Local Health Integration Network (LHIN) was charged with finding appropriate regional responses to the issues of old age and the dearth of health care. Weekly I traveled to Orillia to work with some phenomenal men and women representing various stakeholders who served seniors: LTC; Alzheimer’s groups; private, profit, and non-profit groups; medical professionals: a geriatrician, geriatric nurses, CCAC nurses; and so on. It was an interesting process and I learned a great deal about the health care system while participating in this project.

In regards to my psychosocial health*, I knew that time healed all. It was getting easier to move around this place and deal with the little things in a day that raised my ire a month or two ago. Small things in the past year would overwhelm me and cause me to cry. I forced myself to stop, regroup, and let it all go. New projects kept me busy. I could see, now, from my involvement with projects related to seniors and aging, how I had learned from all I had been through. I could see that now. It has been eight months since I lost my father; more than a year--nearly a year and a half--to grieve for my mother. Where does the time go? I still found myself wanting to take Mom photos to show her places we had been or to laud the achievements of her grandchildren. As I look forward to being a grandmother, I know that the circle of life completes itself, as it should.

The more I talk to others, the more I realize that things were not as they should have been in the final months. Mom denied all that was happening in an effort to not allow it to be so. I still feel regret that I was not here to help her pass over. She thought, I believe now, that I could not have handled it. Always, one had to remember that our children are our future. We need to model death and dying, as much as living. Our children need room to grow. The old trees fall over in the forest and leave space for the younger trees to grow and seek the light; we age and step aside for our young ones. We could prepare for it and encourage them to be individuals and to be independent. And, when it was time, we could let go and let them become adults and contributing members of society. It is in the giving that we receive.
As I prepared to go to Ottawa to my daughter’s baby shower, I hoped I could pass on all I had learned. Another part of me wondered if I needed to. The lessons we learn are ours and are learned in a different age and time. We can do no more than provide roots and wings. The trees grow; they pass their time in the seasons of the sun, then, when we shed our leaves for the final time we know that others would follow. No one stands in the forest where and when and as I do. I would not shelter my children. I could give them shade and support. I had to trust and have faith.
~~~~~~~~
*Major depressive disorder is defined in the DSM-IV-TR (the bible of the American Psychiatric Association, 2000) as characterized by a period of at least two weeks where a person has (a) a depressed mood and/or (b) loss of interest or pleasure in regular activities. Beery, et al. (1997) examined the changes and the effects caregiving has on elderly spouses. They are profound: spouses can experience traumatic grief, as well as depression symptoms.
If stress persists, there are chemical changes in the body. I could see this happening in me as I fought for Dad. These changes are not restricted to the body; they impact one’s life psychologically and socially. In the research I did for my psychobiology course, I found that there were many signs of depression:

• Lack of interest in formerly pleasurable activities
• A change in eating patterns
• Changes in sleep patterns
• Feelings of worthlessness or guilt
• Energy level decrease
• Problems making decisions
• Thoughts of suicide

I experienced many of these symptoms in various stages. Depression can be brought on by an extreme response to life’s normal passages (moving, a new job, childbirth, death of a loved one). I hit a lot of these milestones in one go! Depression could occur during the entire adult stage of life, but it was more frequently diagnosed in early adulthood with new challenges faced by those just navigating the path of adulthood, and less frequently in late adulthood as a healthy adult adjusts to life in society (Sigelman and Rider, 2006).

REFERENCES

2007-09-24T06:33:00.000-07:00

These are all of the books and journal articles I read in preparation for caring for my father, as well as writing my book.

Advocacy Centre for the Elderly (ACEL) and Community Legal Education Ontario (CLEO). 2005. Every Resident: LTC Bill of Rights. Retrieved February 28, 2008, from www.cleo.on.ca/english/pub/onpub/PDF/seniors/everyres.pdf.

Alberta Mental Health Board. 2006. Mending Minds: 2006 AMHB Research Showcase. Alberta: Author.

Albom, M. 2002. Tuesdays with Morrie. New York: Broadway.

Alexopoulos, G.S. 2005. Depression in the Elderly. Lancet, 365(9475), 1961–70.

American Psychiatric Association. 1994. Diagnostic and Statistical Manual of Mental Disorders (4th Ed.), Washington, D.C.: Author.

Anhensel, C.S., et al. 1995. Profiles in caregiving: The unexpected career. San Diego: Academic Press.

Appleby, L., Cooper, J., Amos, T., & Faragher, B. 1999. Psychological autopsy study of suicides by people aged under 35. British Journal of Psychiatry. 175, 168–74.

Avis, N. E. 2003. Depression during the menopausal transition. Psychology of Women Quarterly, 27 (2), 91–100.

Balducci, L., & Carreca, I. 2002. The role of myelopoietic growth factors in managing cancer in the elderly. Drugs, 62(1), 47–63.

Balkin, R.S., Tietjen–Smith, T., Caldwell, C., & Yu-Pei, S. 2007. The utilization of exercise to decrease depressive symptoms in young adult women. Adultspan: Theory Research & Practice, 6(1), 30–33.

Beery, L.C., et al. 1997. Traumatic grief, depression and caregiving in elderly spouses of the terminally ill. Journal of Death and Dying, 35(3).

BrainHospice.com. n.d. Symptoms Timeline (for those approaching death). Retrieved November 14, 2007, from www.brainhospice.com/SymptomTimeline.html.

Brain Tumour Foundation of Canada. 2003. Retrieved June 16, 2008 from www.braintumour.ca.

Brant LTC Best Practices Work Group. May 2007. Reference guide for pain assessment, care planning and monitoring. Retrieved August 25, 2007, from www.rgpc.ca/research/research.cfm.

Bredeson, P.V. 2003. Breaking the silence: Overcoming the problem of principal mistreatment of teachers. California: Corwin Press.

Breslin, J.M., MacRae, S.K., Bell, J., & Singer, P.A. 2005. Top 10 health care ethics challenges facing the public: Views of Toronto bioethicists. BioMed Central Limited, 6, 5. Retrieved February 28, 2008, from
www.biomedcentral.com/1472-6939/6/5.

Bruera, E., et al. 1991. The Edmonton symptom assessment system (ESAS): A simple method for the assessment of palliative care patients. Journal of Palliative Care. 7 (2): 6–9. Retrieved February 28, 2008, from www.palliative.org/PC/ClinicalInfo/AssessmentTools/AssessmentToolsIDX.html.

Burton, L.M., & Merriwether–deVries, C. 1995. Context and surrogate parenting among contemporary grandparents. Marriage & Family Review, 20 (3.4), 349–66.

Bush, A., & Carter, P.A. 2004. The effect of cancer patients’ pain and fatigue on caregiver depression level and sleep quality. Journal of Undergraduate Nursing Scholarship, 6 (1) Retrieved January 22, 2008 from http://juns.nursing.arizona.edu/contents6.htm.

Callahan, C.M., Hendrie, H.C., & Tierney, W.M. 1995. Documentation and evaluation of cognitive impairment in elderly primary care patients. Annals of Internal Medicine 122, 422–29.

Canadian Mental Health Association 2006. Suicide. Retrieved June 28, 2007 from www.ontario.cmha.ca/content/about_mental_illness/suicide.asp?cID=3965.

Canadian Study of Health and Aging Working Group. 1994. Patterns of caring for people with dementia in Canada. Canadian Journal of Aging. 13, 470–87.

Canadian Study of Health and Aging Working Group. 2002. Patterns and health effects of caring for people with dementia: The impact of changing cognitive and residential status. Gerontologist, 42(5), 643–52.

Canadian Women’s Healthcare Network 1998. Caregiving still in women’s job description. Retrieved June 30, 2008, from
www.cwhn.ca/network-reseau/1-3/spare.html.

Cancer Care Nova Scotia. Patient Navigation. Retrieved June 14, 2008, from www.cancercare.ns.ca/inside.asp?cmPageID=89.

Caprio, A. J., et al. 2008. Pain, dyspneas, and the quality of dying in long-term care. Journal of the American Geriatric Society, 56 (4), 683–88.

Capuron, L., et al. 2002. Association between decreased serum tryptophan concentrations and depressive symptoms in cancer patients undergoing cytokine therapy. Molecular Psychiatry, 7(5), 468–73.

Cole, M.G. 2004. Delirium in elderly patients. American Journal of Geriatric Psychiatry, 12, 7–21.

Comino, E.J., et al. 2000. Prevalence, detection and management of anxiety and depressive symptoms in unemployed patients attending general practitioners. Australian & New Zealand Journal of Psychiatry. 34(1), 107–13.

Cotton, C. 2004. About lymphedema. Retrieved on-line, May 24, 2008, from lymphontario.org.

Cummings, J.L., & Jeste, D.V. 1999. Alzheimer’s disease and its management in the year 2010. Retrieved August 29, 2008, from http://www.psychservices.psychiatryonline.org/cgi/content/full/50/9/1173#R50910912.

Depression Bipolar Support Alliance. Retrieved July 21, 2007, from www.dbsalliance.org.

Doidge, N. 2004. Making the Modern World. Measuring the unmeasurable: An introduction to psychology. Retrieved June 25, 2007 from www.makingthemodernworld.org.uk/learning_modules/psychology/02.TU.04/

———. 2007. The brain that changes itself. New York: Penguin.

Emick, M. A., & Hayslip, B. 1999. Custodial grandparenting: Stress, coping skills, and relationships with grandchildren. International Journal of Aging and Human Development. 48(1), 35–61.

Feil, D. G., MacLean, C., & Sultzer, D. 2007. Quality indicators for the care of dementia in vulnerable elders. Journal of the American Geriatric Society, 55, 293–301.

Forster, A. J., et al. 2004. Adverse events among medical patients after discharge from hospital. Canadian Medical Association Journal. 170, 345–49.

Frankl, V. 2006. Man’s search for meaning. Boston: Beacon Press.

Gallagher–Thompson, D., & Coon, D.W. 2007. Evidence-based psychological treatments for distress in family caregivers of older adults. Psychology and Aging, 22(1), 37–51.

Gaugler, J.R., Zarit, S.H., & Pearlin, L.I. 1999. Caregiving and institutionalization: Perceptions of family conflict and socioemotional support. International Journal of Aging and Human Development, 49(1), 1–25.

Goldberg, N. 2005. Writing down the bones. 2nd ed. Boston, MA: Shambhala.

Government of Canada. 2000. Quality end-of-life-care: The right of every Canadian. Retrieved February 22, 2008, from www.parl.gc.ca/36/2/parlbus/commbus/senate/Com-e/upda-e/rep-e/repfinjun00-e.htm.

Grafton, S. 2007. T is for trespass. New York: GP Putnam & Sons.

Grov, E.K., Fossa, S.D., Tonnessen, A., & Dahl, A.A. 2006. The caregiver reaction assessment: Psychometrics, and temporal stability in primary caregivers of Norwegian cancer patients in late palliative phase. Psycho-Oncology, 15, 517–27.

Grunfeld, E., et al. 2004. Family caregiver burden: Results of a longitudinal study of breast cancer patients and their principal caregivers. Canadian Medical Association Journal, 170 (12).

Gulli, C. & Lunau, K. 2008. Canada’s doctor shortage worsening. Retrieved on-line June 30, 2008, from www.thecanadianencyclopedia.com/index.cfm?PgNm=TCE&Params=M1ARTM0013191.

Hamilton, M. 1960. A rating scale for depression. Journal of Neurology, Neurosurgery and Psychiatry, 23, 56–62.

Health Canada. 2002. Investigation and assessment of the navigator role in meeting the information, decisional and educational needs of women with breast cancer in Canada. Retrieved on-line August 28, 2008, from www.phac-aspc.gc.ca/ccdpc-cpcmc/cancer/publications/navigator_e.html.

Heart’s Way Hospice. 2006. As death approaches. Retrieved June 14, 2008, from www.heartswayhospice.org/as_death_approaches.htm.

Heckman, G. 2004. The hazards of health care. Retrieved August 29, 2008, from www.rgpc.ca/files/Hazards%20of%20Hospitalization%20Role%20of%20Geriatrics%20Rev.ppt.

Heru, A.M., & Ryan, C.E. 2002. Depressive symptoms and family functioning in the caregivers of recently hospitalized patients with chronic/recurrent mood disorders. International Journal of Psychosocial Rehabilitation, 7, 53–60.

Hodkinson, H. 1972. Evaluation of a mental test score for assessment of mental impairment in the elderly. Age and Ageing, 1, 233–38.

Holmes, H.M., Hayley, D.C., Alexander, G.C., & Sachs, G.A. 2006. Reconsidering medication appropriateness for patients late in life. Archives of Internal Medicine, 166, 605–9.

Holmes, H. M., et al. 2008. Integrating palliative medicine into the care of persons with advanced dementia: Identifying appropriate medication use. Journal of the American Geriatrics Society. Published article on-line: 14-May-2008 doi: 10.1111/j.1532-5415.2008.01741.x.

Hosseini, K. 2007. A thousand splendid suns. USA: Penguin Group.

Human Resources and Social Development Canada. 2008. Indicators of well-being in Canada. Retrieved August 28, 2008, from www4.hrsdc.gc.ca/indicator.jsp?indicatorid=3〈=en

Ingram, J. 1994. Talk, talk, talk. USA: Random House.

Jennett Chapel. 2007. A celebration of life. Retrieved September 2, 2007 from www.funeralhome.on.ca/burial_cremation.htm.

Jilks, J. 2007. The use of autobiography in therapy: A Gestalt-based approach. Retrieved February 27, 2008, from www.jilks.com/articles/AutobiographyTherapy.htm.

Kim, Y., Duberstein, P.R., Sørensen, S., & Larson, M. (2005). Levels of depressive symptoms in spouses of people with lung cancer: Effects of personality, social support, and caregiving burden. Psychosomatics, 46, 126–30.

King, S. 2006. Pink ribbons, inc.: Breast cancer and the politics of philanthropy. Minn.: University Of Minnesota Press.

Kübler–Ross, E. 1997. Death: The final stage of growth. Carmichael, CA: Touchstone Books.

———. (1998). The wheel of life: A memoir of living and dying. Carmichael, CA: Touchstone Books.

Kübler–Ross, E., & Kessler, D. 2005. On grief and grieving: Finding the meaning of grief through the five stages of loss. New York: Scribner.

Kushner, H. S. 2006. Overcoming life’s disappointments. USA: Random House.

Logsdon, R.G., Gibbons, I.E., & McCurry, S.M., et al. 1999. Quality of life in Alzheimer's disease: patient and caregiver reports. Journal of Mental Health and Aging, 5, (1).

Magai, C. & Cohen, C.I. 1998. Attachment style and emotion regulation in dementia patients and their relation to caregiver burden. Journal of Gerontology Psychological Sciences, 53B(3), 147–54.

Mausbach, B.T., et al. 2007. Depression and distress predict time to cardiovascular disease in dementia caregivers. Health Psychology, 26, 539–44.

Mood Disorders Association of Ontario. n.d. Depression. Retrieved June 28, 2007, from www.mooddisorders.on.ca/dep.html.

Morimoto, T., Schreiner, A.S., & Asano, H. 2001. Perceptions of burden among family caregivers of post-stroke elderly in Japan. International Journal of Rehabilitation Research, 24, 106.

Nease, D.E., & Malouin, J.M. 2003. Depression screening: A practical strategy. Journal of Family Practice, 52(2), 118–26.

Nemeroff, C.B., & Owens, M.J. 2002. Treatment of mood disorders. Nature Neuroscience, 5(11), 1068–70.

Nunley, K. 2003. A student’s brain: The parent/teacher manual. Boston: Morris Publ.

Ohgaki, H., & Kleihues, P. 2005. Journal of Neuropathology Experimental Neurology, 64(6), 479–89.

Ontario Government. n.d. Accessing a long-term care facility. Retrieved January 23, 2008, from www.health.gov.on.ca.

O’Rourke, N., & Tuokko, H. 2000. The psychological and physical costs of caregiving: The Canadian Study of Health and Aging. Journal of Applied Gerontology, 19(4), 389–404.

O’Rourke, N., Cappeliez, P., & Neufeld, E. 2007. Recurrent depressive symptomatology and physical health: A 10-year study of informal caregivers of persons with dementia. Canadian Journal of Psychiatry, 52(7), 434–41.

Pagel, M., & Becker, J. 1978. Depressive thinking and depression: relations with personality and social resources. Journal of Personality and Social Psychology, 52(5), 1043–52.

Pennebaker, J.W. 2004. Writing to heal: A guided journal for recovering from trauma & emotional upheaval. Oakland, CA: New Harbinger.

Phillips, D. n.d. Seeking peace: Brain tumour hospice care. Retrieved November 14, 2007, from www.brainhospice.com/index.html.

Picard, A. 2008. The orphans of medicare. Retrieved on-line June 30, 2008, from www.theglobeandmail.com/servlet/story/RTGAM.20080623.wmhhospitals24/BNStory/mentalhealth.

Pinel, J. 2006. Basics of biopsychology. Toronto: Pearson, Allyn & Bacon.

Rachlis, M. 2005. Prescription for excellence. Retrieved August 29, 2008, from http://www.michaelrachlis.com/publications.php.

———. 2006. Seniors’ health: We can’t afford the future if we don’t repeat the past. Retrieved August 29, 2008, from www.coaottawa.ca/health_forum/DrRachlis.ppt.

Rachlis, V. 2005. “Inside out”: Letter from the president, Dr. Val Rachlis. Retrieved June 30, 2008, from www.ocfp.on.ca/local/files/Communications/Ltr2Mbrs/2005/Ltr2MbrFeb15-05.pdf.

Redinbaugh, E.M., MacCallum, R.C., & Kiecott–Glaser, J. K. 1995. Recurrent syndromal depression in caregivers. Psychology and Aging, 10 (3), 358–68.

Regional Geriatric Program. 2006. BP Blogger. Retrieved September 15, 2007, from www.rgpc.ca.

Reker, G.T. 2002. Prospective predictors of successful aging in community-residing and institutionalized Canadian elderly. Ageing International, 27, 42–64.

Rudolph, J.L., & Marcantonio, E.R. 2003. Diagnosis and prevention of delirium. Geriatrics & Aging, 6 (10), 15–19. (www.geriatricsandaging.ca)

Semple, S.J. 1992. Conflict in Alzheimer’s caregiving families: Its dimensions and consequences. The Gerontologist, 32, 648–55.

Schreiner, A.S., & Morimoto, T. 2003. The Relationship between mastery and depression among Japanese family caregivers. International Journal of Aging and Human Development. 56(4), 307–21.

Sherman, F.T. n.d. The 10 minute geriatric assessment. Retrieved February 23, 2008, from www.sergp.org/Presentations/The 10 Min Geriatric Assessment.ppt.

Shrank, W.H., Polinski, J.M., & Avorn, J. 2007. Quality indicators for medication use in vulnerable elders. Journal of the American Geriatrics Society, 55(2), 373–82.

Sigelman, C.L., & Rider, E.A. 2006. Life span human development (5th ed.). Belmont: Thomas Wadsworth.

Solomon, P.R., et al. 1998. Ten-minute geriatric assessment. Arch Neurology, JJ, March 1998, 349–55. Retrieved online May 14, 2008, from www.sergp.org/toward_best_geriatric_practice.htm.

Statistics Canada. 1997. A portrait of seniors in Canada, Second ed. Ottawa: Author.

Statistics Canada. 2006. A portrait of seniors in Canada. Ottawa: Author.

Tang, S.T., Li, C.W., & Liao, X.Y. 2007. Factors associated with depressive distress among Taiwanese family caregivers of cancer patients at the end of life. Palliative Medicine, 21(3), 249–57.

Tavris, C., & Aronson, E. 2007. Mistakes were made (but not by me): Why we justify foolish beliefs, bad decisions, and hurtful acts. New York: Harcourt.

Taylor, J. 2008. My stroke of insight: a brain scientist’s personal journey. New York: Viking.

Twaddle, M.L., et al. 2007. Palliative care benchmarks from academic medical centers. Journal of Palliative Medicine, 10(1), 86–98.

Watson, Y.L., Arfken, C.L., & Birge, S.J. 1993. Clock Completion: An objective screening test for dementia. Journal of the American Geriatric Society, 41, 1235–40.

Wenger, N.S., Roth, C.P., & Shekelle, P. 2007. Introduction to the assessing care of vulnerable elders-3 Quality Indicator Measurement Set. Journal of the American Geriatrics Society, 55(2), 247–52.

Dad’s Passing

2007-02-16T06:28:00.000-08:00

At 12:15 they came in and repositioned him, shifting his weight to his other shoulder. The PSW offered me tea, coffee or juice and I asked for some tea. He brought me a tray. I held dad’s hand, rubbed his boney shoulder, rearranged his blankets and looked at his mottled hands again. I counted his breaths at 12:50 and he was breathing 7 times every ten seconds. By 1:00 a.m. he was up to eight breaths. At 1:15 I heard Cheynes-Stokes breathing. His breathing stopped for about 10 seconds or so – it was hard to tell as time stopped for me. It wasn’t upsetting at all. I sat beside him holding my breath. When he started breathing again I was upset. I didn’t know how much longer I could take this! He needed to finally be out of pain. Mom, his parents, his cats and dogs; all were waiting. I had three cups of hot tea and made several visits to the bathroom, darn glad I had had the toilet seat changed back. I think I nearly took out the PSW in the doorway, the bathroom door being behind the entry door, when he came to check on us.

The PSW told me that he quite enjoyed caring for my dad. He told me he gave dad pain pills as needed on those nights that dad was loudly vocal, some days they could hear him singing down the hall and around the corner in the nurse’s office. They made sure that they gave him the pills before they moved him. I was grateful. Dad appeared uncomfortable every time they had put him into the swing lift for several weeks now.

He spoke of how they had had to watch him carefully. Dad liked to get out of bed in the night. Holly, his first charge nurse, found him a bed with raised sides. Even then dad would position himself at the end of the bed, feet hanging over the side. They had to laugh. He was a challenge, but The PSW thought that he must have been a good man in his prime. Always polite and thanking them for things they would bring him.

I took a break, the room was dry and I needed to stretch. I walked out into the hall. Here was Donny, a resident, using his feet to wheel himself back and forth across the end of the hall. It looked like a Monty Python skit. Back and forth in the darkened hallway. I asked The PSW if Donny was always up at night! He said no, that likely he had slept all day. Back into the room I went, trying to get some sleep. I was on edge and wary.

At 1:24 dad had an apnea episode and stopped breathing for two seconds. I thought back to a time in the Manor, when I was running back and forth between work and home and Gravenhurst, Dad said I looked tired. Then he patted the bed and said I could sleep there! Now, here I was keeping him company at last. He had his way.

I had another flashback. When I was a child, I was afraid of the dark hall I had to travel to get to the bathroom. I remember that there was a red light in the base of the light, a reflector of some sort. It scared me. I would go and stand and wait beside his bed until he woke up. He would ask, “What is it, Jen?”
“I have to go to the bathroom.”
“Well, off you go then.” I think I just need to know that someone was there for me. I was glad to do the same for him.
I settled back into bed around 3:00 a.m., feeling that it would be a bit longer. I drifted off to sleep. I jerked awake after 4:20. I turned my head slowly. All was quiet. Too quiet. I could see that dad’s colour had changed profoundly. Nervously, I approached him and felt him. His face was cold. He had stopped breathing, with his eyes one quarter open, as they had remained for hours. Suddenly, The PSW came back in. He said he had just checked in on dad and found him dead – he didn’t know whether to wake me right away or not. He went and told the nurse. I was glad to get some sleep and there was nothing I could do.

The nurse came and checked dad. His core was still warm and it hadn’t been long ago that he had passed over. I felt as if a burden was lifted from my shoulders. No more guilt, or worrying over whether I had done enough or done the right thing. I asked what had to happen. The doctor they would call at 7:00 a.m., there was no rush. They had rounds to finish and I decided to pack up dad’s room. I couldn’t face going back there that day. They told me I had a couple of days to clean out his things, but felt awake and I didn’t want Brian to lift anything. I carefully removed his Valentine decorations from the door and the window. I went into the bathroom and through out his toiletries and other personal items. I checked his drawers, folded up my comforter, placed the family photos into the pillowcases. It was a two-step process, walking through two passcode protected doors, one floor and a locked front door! They lock the door at night and, having gotten stuck last week, I knew it was hopeless to try and figure out how to get out before the morning staff came on. The PSW came in and washed dad’s body while I took things down to the car.

The PSW helped me out with some of the things. It was a lonely process going up and down to the second floor. I loaded up the car, under the starlight, and drove home. It was quiet and peaceful. I didn’t phone home, I knew Brian needed his sleep. The place was quite dark, the snow crunched under my boots. I unloaded just dad’s plant, not wanting to let it die in the minus 15 degree Celsius cold. I didn’t bother bringing anything else in. These things would wait until dawn arrived. It was 6:00 and I saw Brian at the top of the stairs. I asked him if he’d make me a coffee. The cat was halfway towards the stairs, not knowing if she was going to be fed or if I would go to bed. Brian went to get his robe and I followed him upstairs. I said, “He’s gone”.

Brian responded, “I thought so.” He made me coffee, as he does almost every day, and I started to make a list of things to do. Writing always helps me. We sat and talked. Brian pointed out that we would be hard-pressed to get over the habit of giving visiting dad so much of the time. I began to make a fire in the wood stove. I thought, as I often did, that I could phone mom and tell her how well I had done. Foolish thought, but a habit I cannot seem to break. I knew that she was in her new home and getting things ready for dad! The house was quite cold, as we turn down the thermostat at night. The fire made it cozy in no time. We talked.

By 7:00 o’clock I phoned my daughter, knowing she had to get ready for work, and to tell her the news. I woke her husband and we chatted. I explained that Robin and I would not be doing a funeral until spring. JL said that Caitlin wanted to come, but with my brother arriving Saturday, we would cope. Jesse was to visit on Wednesday, and that would be great. We had the roof shingles to finish and chores to take care of. I have found that the time immediately after a death in the family is the easiest. With things to do and comforting words of those one meets there is a sense of purpose. When everyone goes home and the void begins where the loved one used to be – that is the most difficult. A funeral demands much time and energy.

I made phone calls. Made an appointment with the Funeral Home for the afternoon, I gathered papers; birth certificate, certificate of marriage and so on. By 9:00 a.m. the roofers were back. The cat was quite perturbed. Brian said she was quite worried about the BIG squirrels on the roof. She would sit there and look up at the ceiling with great concern. The banging went on all day. It began to irritate me after some time. I mentally kicked myself. Here are these men working in sub-zero weather giving us a new roof. Eventually it was time to go into town for the errands.

Brian and I went into town for our appointment at the funeral home. By then dad’s body had been brought from LTC to the Funeral Home. He went into LTC and gathered up dad’s clothes for me while I met with Cathy, who worked there. We planned out what we needed to do, more papers we needed to find, and I gave her a copy of the obituary notice I had written with input from my brother. We wrote up a contract for services. My brother had begun this process for mom last May, by the time I had returned from Toronto. It was my turn.

There is a set form, with lines for the various components of a funeral arrangement: consultation, fees, funeral home reception and supervision, procuring and completion of documents, embalming, shrouding, use of facilities, memorial stationary, visitor’s register book, transportation, transfer to the crematorium, coroner’s certificate, death registration fees, casket and urn. I, as executrix, had to sign the contract. We priced various urns. Then Brian and I went and saw dad’s body and said our goodbye. He would be cremated immediately. That gave us time to plan the memorial service later in the spring. In hindsight I shouldn’t have gotten the register or the thank you notes from the funeral home. The register was barely used. I did not call all of dad’s friends – I assumed people would know from the announcement in the post office and the newspaper. What a mistake, I think. I could have picked out a few very special notes.

Brian took me out to dinner. It was good not to have to cook and think logically in one area. We had a living room full of dad’s things and there was lots to do. We watched a DVD that evening. Escape was welcome. The problem was I fell asleep about 10 minutes into it! We decided to go to bed. Neither of us had slept well the previous night.

Dad's last few hours

2007-02-15T08:20:00.000-08:00

Thursday, February 15, 2007 Prepare the Way
The phone rang at 1:00 a.m. The PSW had gone in to visit dad, which they did hourly, and he seemed to be very badly off. They would touch his arm and speak his name. He was unresponsive. They thought I should know. They were not sure if I should come in or not. They were not sure how imminent or how quickly he might leave us. They agreed to call me back at 3:30 and keep me updated. They didn’t call back and I fell asleep around 3:00. I woke at 7:00 a.m. and hurriedly got dressed, had some coffee and packed up a blanket, a thermos and some other things.

I had gone into the Leisureworld around 8:30; I saw Denise in the hall and asked if she could tell me about the rest of his night. She hadn’t had time to read his file but promised to get back to me. I went into his room. He was lying on his back with an oxygen tube in his nose. Apparently, even when mouth breathing enough oxygen gets into his lungs as he sucks in the air. Dad was mouth breathing, with some rattling in his chest. There was paraphernalia on the table beside him. I had no idea what it all was for. His eyes were one quarter open and unresponsive. Large half Q-tips, a container of Vaseline, another of mouthwash, I thought.

I had brought in a big comforter, which was washed and returned later, along with several pillows and pillowcases. They proved invaluable later on. The PSW asked if I wanted him to go to breakfast or if I wanted them to bring in a tray. I knew he couldn’t eat. I had tried giving him some water on Tuesday and he could not suck from the straw. At this point he hadn’t had anything to eat or drink in twenty-four hours. He can’t eat or he would choke. From time to time he would hiccup. I thought he might have had a slight convulsion. He kept on blinking, but did not say anything. I dug under the covers and found a hand to hold. Surprisingly it was warm. His feet, remarkably, were not so swollen anymore. This was peculiar as this condition had begun in the summer and had not gone away despite diuretics and his special socks.

There was a call in to the doctor, who did not work on Wednesdays but would be in to his office later. The staff was kind. Finally, at 10:00 a.m., we got an order for dad to have injections of morphine, 2-5 mg every two hours, as needed. It was such a relief. They gave him 2 mg and he seemed more comfortable. Some workers thought he was not in pain, but I knew better. I knew him so well by now. He was in a hospital gown. I asked about the toilet seat, which had been changed for a higher one. He hadn’t been on the toilet for months. I asked if they could put a regular one on now, as I knew it would be a long few days. The custodial staff needed a nurse’s order to do so. We made it so! The only public washroom that I knew of was on the main floor. This would make it very handy for me, as long as no one walked in on me! In fact, I nearly took out a couple of staff members when I came out of the door a couple of times.

Audrey came up to the room and told me that the Director of Care would be in to see me before long. The PSW said to hit the button if anything changed or if I needed anything. They looked after me. They had put a radio in the room and they were playing some old songs. It was comforting. They shifted him at 10:30. I decided to go and get something to eat. Brian had poured me a coffee in his travel mug and I knew I was getting light-headed. I was scolded affectionately for not staying out and having a relaxed breakfast, but I wanted to get back to dad. I had my second cup of coffee and breakfast sandwich in dad’s room.

I phoned Brian. He said he would come in around noon. Then the Director of Care (DOC) came in. She found me a good chair, found herself one, and we settled in for a chat. She explained many details to me; outlining what I could expect in the next few days. She said he could have his morphine injections until the end. It was a judgment call when he needed another injection, but I was the one in the best position to make that decision. It is far better to err on the side of comfort, rather than too much. He had been aphasic for days. She explained about the oxygen. If they don’t have it they panic because they cannot breathe. It is a comfort measure. She explained that the body could go 3 minutes without air, 3 days without water and 3 weeks without food. Dad was 2 days without water at this point.

The DOC explained the symptoms of approaching death; sleepiness, confusion, decreased appetite, decreased urine output, lack of response to calling their name. His breathing vacillated from regular breathing to irregular. With cranial involvement we can expect apnea. She explained Cheynes-Stokes respiration. This is the gradual increasingly quick intake of breath, followed by an episode of apnea, stopping breathing, for 15 – 45 seconds. As the body shuts down, it stops sending oxygen to the extremities. She said to look for cyanosis, which is the discolouration of the skin due to deoxygenated hemoglobin in blood vessels. Sometimes the organs shut down or the body sends oxygen to organs rather than the extremities. There is mottling in the hands or feet. Once this occurs, death is imminent - within 72 hours.

A web site entitled, “As Death Approaches” says: “The fear of the unknown is always greater than the fear of the known” and that is true. It was comforting to know what to expect, not that all of this has to occur. She reminded me to look after myself, to take regular breaks. She said to talk to him and let him know I was there. She felt for his heartbeat, which was weakening. She showed me how to do mouth care and told me that the mouth care he had received so far was excellent. Staff came in and helped them check his position. Dad was moaning and he was twitching. He could have been having more seizures. His forehead, where the tumour was growing, was a brighter red than elsewhere.

Brian arrived to spell me off and I went home for a break. He phoned on his cell phone every few hours, while I supervised the roofers and chatted with them. At 5:00 the clouds began rolling in and we were having snow squalls. I told Brian to come home. I had put a phone call into my brother and was waiting to tell him what was going on.

I made it back to the hospital for 5:30 p.m. after picking up a Sub sandwich and a couple of juices and potato chips – to hell with the weight management. At 5:50 the doctor arrived, he decided to pop in and see if I needed anything. The RN, came in at 6:50 and every hour until she left. She checked him and asked if I thought he needed more morphine. In hindsight, I wish I had given him some. I didn’t see evidence that he was in pain, but felt that he had no way of letting me know. He was still blinking; his forehead and hands were red. He was breathing 5 times every ten seconds. I don’t know why I measured it. It was good to have something to do, other than the mouth care.

I rearranged the big easy chair twice, eventually pulling it out and putting the comforter and three pillows on top. It was comfortable. The oxygen tank pulsed all night. That in and out was a form of white noise that canceled out all the noises in the hall, people, and pages for various staff members, residents wandering the halls. I had brought my computer with family photos on it and was sorting the photos, traveling down memory lane and remembering all of the wonderful things dad was and had been for me and for many others: father, husband and volunteer. At 8:00 p.m., he was breathing six breaths every ten seconds. By ten p.m. I had inhaled my food, had one of my juices and watched four CSIs in a row! It was bizarre and most surreal sitting there checking him every so often. It was comforting watch the TV and removing myself from the situation from time to time. It was a breather of sorts.

I went closer to dad, for the umpteenth time looking for signs. The RN had checked his feet for cyanosis, but I found it in his hands. I looked at one eye and a tear was starting to fall from it. For some peculiar reason I hesitated – do I ask for more meds? He was otherwise quiet and didn’t appear in pain. When the other eye began to tear I pushed the buzzer and asked for morphine. It was 10:45 p.m., I looked at dad’s ribs sticking out, his organs were so small and there appeared to be nothing left of him.

At 11:00 I did mouth care for him, just as Diana had done. I made a mess and got Vaseline on his beard, but didn’t worry about it. I knew he would forgive me.

as death approaches

2007-02-15T06:27:00.000-08:00

The DOC explained the symptoms of approaching death; sleepiness, confusion, decreased appetite, decreased urine output, lack of response to calling their name. His breathing vacillated from regular breathing to irregular. With cranial involvement we can expect apnea. She explained Cheynes-Stokes respiration. This is the gradual increasingly quick intake of breath, followed by an episode of apnea, stopping breathing, for 15 – 45 seconds. As the body shuts down, it stops sending oxygen to the extremities. She said to look for cyanosis, which is the discolouration of the skin due to deoxygenated hemoglobin in blood vessels. Sometimes the organs shut down or the body sends oxygen to organs rather than the extremities. There is mottling in the hands or feet. Once this occurs, death is imminent - within 72 hours.
A web site entitled, “As Death Approaches” says: “The fear of the unknown is always greater than the fear of the known” and that is true. It was comforting to know what to expect, not that all of this has to occur. She reminded me to look after myself, to take regular breaks. She said to talk to him and let him know I was there. She felt for his heartbeat, which was weakening. She showed me how to do mouth care and told me that the mouth care he had received so far was excellent. Staff came in and helped them check his position. Dad was moaning and he was twitching. He could have been having more seizures. His forehead, where the tumour was growing, was a brighter red than elsewhere.
Brian arrived to spell me off and I went home for a break. He phoned on his cell phone every few hours, while I supervised the roofers and chatted with them. At 5:00 the clouds began rolling in and we were having snow squalls. I told Brian to come home. I had put a phone call into my brother and was waiting to tell him what was going on.
I made it back to the hospital for 5:30 p.m. after picking up a Sub sandwich and a couple of juices and potato chips – to hell with the weight management. At 5:50 the doctor arrived, he decided to pop in and see if I needed anything. The RN, came in at 6:50 and every hour until she left. She checked him and asked if I thought he needed more morphine. In hindsight, I wish I had given him some. I didn’t see evidence that he was in pain, but felt that he had no way of letting me know. He was still blinking; his forehead and hands were red. He was breathing 5 times every ten seconds. I don’t know why I measured it. It was good to have something to do, other than the mouth care.
I rearranged the big easy chair twice, eventually pulling it out and putting the comforter and three pillows on top. It was comfortable. The oxygen tank pulsed all night. That in and out was a form of white noise that canceled out all the noises in the hall, people, and pages for various staff members, residents wandering the halls. I had brought my computer with family photos on it and was sorting the photos, traveling down memory lane and remembering all of the wonderful things dad was and had been for me and for many others: father, husband and volunteer. At 8:00 p.m., he was breathing six breaths every ten seconds. By ten p.m. I had inhaled my food, had one of my juices and watched four CSIs in a row! It was bizarre and most surreal sitting there checking him every so often. It was comforting watch the TV and removing myself from the situation from time to time. It was a breather of sorts.
I went closer to dad, for the umpteenth time looking for signs. The RN had checked his feet for cyanosis, but I found it in his hands. I looked at one eye and a tear was starting to fall from it. For some peculiar reason I hesitated – do I ask for more meds? He was otherwise quiet and didn’t appear in pain. When the other eye began to tear I pushed the buzzer and asked for morphine. It was 10:45 p.m., I looked at dad’s ribs sticking out, his organs were so small and there appeared to be nothing left of him.
At 11:00 I did mouth care for him, just as Diana had done. I made a mess and got Vaseline on his beard, but didn’t worry about it. I knew he would forgive me.

PSW care

2007-02-13T09:27:00.000-08:00

Brian, after his massage therapy, went in to see dad. He had refused to take his pills today and he was loud, yelling and in pain. Brian went to see the nurse. Dad had refused his Ativan and his other pills. They talked him into taking his Percoset, which lessens his pain, and after some time it will kick in. What do we do if he refuses to take the pain pills? Sure enough he has refused them, as he has so often done with pills when I am there. It must happen once a day.

The CCS research has told me that one result of the brain tumour is intercranial pressure (ICP). These are the symptoms of this. I know that dad has shown these symptoms over the course of the past eleven months, since his tumour was rediagnosed.

1. headache – often occurring early in the morning and made worse by coughing, bending or straining
2. nausea
3. vomiting
4. dizziness
5. vision problems
6. difficulty speaking
7. confusion
8. restlessness
9. drowsiness and decreased consciousness
10. trouble with coordination
11. loss of muscle strength
12. loss of the ability to move a body part (paralysis)
13. seizure
14. coma

I went in to see dad before choir practice in Orillia. A PSW had just changed dad’s sheets. I had seen her from the parking lot as I looked up at dad’s window. His Valentine decorations were a bright spot in an otherwise bland institutional building. Snow has piled up and was quite a chill in the minus 15-degree brisk winter air. Once I made it up to his room I found him in his chair, with his head lolling over to one side. I mentally kicked myself since I had washed his Obus form cover and had forgotten it at home. I had forgotten to send Brian in with it, too. It would have helped him greatly. He won’t lean back and put his head on the headrest. Occasionally his head would shake with tremours. It pained me to look at him.

He was trying to form words but could not speak clearly. He spoke as if he had marbles in his mouth. I thought I heard, “Yie down.” meaning he wanted to lie down. He spoke this phrase several times, too ill to gesture any more. He just cannot relax. I heard him say aaggghh. I knew that there were two staff members on breaks after the meal they had just served at five. I could hear staff calling for help with ‘lifts’, putting residents into bed. I decided to sit and wait until staff came, as I knew they would eventually.

The PSW came into the room. The PSW mentioned that she had just changed his bed, as it was quite messy and smelly with bowel movements. I thanked her for doing so and showing such concern. We spoke of his ear problem. There were crusted bits in it. I told her he had big wax problems and she thought that he had an ear infection. I told her that I though he was in more pain than the medications could help.

When they began to change his adult diaper there was a big problem. Nursing staff had given him a laxative, since he had been constipated. He hadn’t eaten anything in ages, but I am just the daughter. The ladies began to lift him; he groaned as they did so. He could be having any number of symptoms, but I am sure he was in pain. He had been nauseous for months. I could see the bones in his back sticking out. He was as gaunt as a holocaust survivor. He had pressure sores from his bones digging through his thin buttock skin into where he sat on the cushioned wheelchair. They wiped and washed and changed him several times, as he was still evacuating his bowels. The kept their sense of humour and smiled. He grunted and moaned. I know the man is in pain. I do not know how to convince them to give him something different. I am so frustrated with the RNs.

Note to staff

2007-02-13T06:26:00.000-08:00

I put a note on dad’s light.

Dear staff,
Dad is in Palliative Care. He is to be kept as comfortable as possible.
Please do not move him unnecessarily. If he does not want to eat, please leave him alone. Getting him in and out of bed agitates him, as well as causing him pain. If you do get him up for a meal, please get him back to bed ASAP.

I have brought in some pillows as the head of his bed should be elevated. He has always had back problems and we bought a support for under his knees, as well as an Obus form for his neck.

When he sits in his chair he cannot support his head. Plese put the Obus form around his neck after a meal.

He has pressure sores which make sitting difficult.

His symptoms include:

Intercranial Pressure – which result in headaches, dizziness, nausea, difficulty speaking, restlessness, confusion.
He cannot hear, he has lost both his hearing aids and his glasses.

Aside from the brain tumour that is growing and sucking nourishment from brain cells, he has severe arthritis in his knees and edema in his feet. The pain from these two physical issues alone have been terrible.

His pain is increasing and there is no reason not to expect it to continue to get worse.

Brain Tumour Symptoms

2007-02-11T13:55:00.000-08:00

Intracranial Pressure: Symptoms
The CCS research had told me that one result of the brain tumour was intercranial pressure (ICP). These were the symptoms of this. I know that dad had shown these symptoms over the course of the past eleven months, since his tumour was rediagnosed.
1. Headache – often occurring early in the morning and made worse by coughing, bending or straining
2. Nausea
3. Vomiting
4. Dizziness
5. Vision problems
6. Difficulty speaking
7. Confusion
8. Restlessness
9. Drowsiness and decreased consciousness
10. Trouble with coordination
11. Loss of muscle strength
12. Loss of the ability to move a body part (paralysis)
13. Seizure
14. Coma

See this page, also.

What to expect?

2007-02-07T06:10:00.000-08:00

--February 7, 2007 Sample chapter

Dad was not putting sentences together very well--he could draw up many nonsensical words. He was napping every few minutes. He had some of his lunch still in his mouth. He was gesturing towards the bed and I knew he wanted to sleep. We pushed the call button and Cynthia came to our aid. She told us she would get Sharon to come and put Dad into bed. Sharon had a lovely sense of nonsense! Dad always smiled when he saw her. She is an attractive woman, perhaps in her thirties or forties, with dark hair and a winning smile. She always made a point of bending over, or kneeling down, and getting at his eye level. She told him she was going to get him into bed. I loved it when they treated him like a person and someone who might be sentient, even though all indicators pointed to the other end of the spectrum.

They brought in the big mechanical lift. This was a piece of equipment about five feet high that was plugged in to charge its batteries when not being used. On wheels, it could be rolled and moved around the room easily. Sharon made Dad lean forward. They put the jacket around his shoulders and up under his legs. She told me that he really did not like it. She apologized to him, even though he couldn’t hear her, for having to use the lift. It was a touching gesture and I think it helped. It certainly helped me. I remember one time that he enjoyed it and was laughing and smiling at me as he was being lifted. Once he was in bed, he was asleep in thirty seconds. We tucked him in. I kissed him goodbye and left.

I adored Sharon’s bedside manner. She was always respectful, kind, and caring at a level that went beyond her training. Her spirit embodied that of the PSW: she treated Dad with such dignity and respect at all times. Despite his inability to hear her, she always explained what she was doing. Jill Bolte Taylor, in her book My Stroke of Insight, demonstrated the respect, or lack thereof, that some staff members or visitors display to those who are perceived to be ill. Dr. Bolte Taylor suffered a life-threatening blood clot in her brain and wrote of her experiences. Since she had moments of clarity, with little brain function on the left side of her brain, she was able to understand emotions and feelings without having the language to articulate them at the time. She reminds caregivers and staff members that the best way to help those who are ill is to let them sleep. Beyond that, a caregiver’s respectful attitude is perceived on a deeper psychosocial level even by those with brain injuries and apparent dementia. She found that those who came in to visit her, if they possessed a positive attitude, and brought energy and a strong spirit into her room, gave her added energy. So many burned-out workers in LTC are hard-pressed to keep their energy up. So many of our RNs and RPNs are stressed-out beyond their abilities to cope. This has a profound effect on those in care. Read more about this on my other blog post: PSWs in Ontario.

Another issue that bothers me is that most staff members called my father by his Christian name. People of his generation, potentially four times the age of their caregivers, are being spoken to quite casually, as one would to a peer or acquaintance. I found this most disheartening. A generational thing, I would prefer more formality.

This new level of Dad’s illness created in me a visceral reaction that still haunts me. I kept fighting the reaction. It affected my whole being: body, spirit, and soul. It was very upsetting, and I kept thinking that I would be getting better soon. I would learn to manage my grief for my late mother, as well as grieving the loss of my father as I knew him. Each stage had an effect upon me. I took my emotions out and examined them like the clothes I was planning on wearing to our Valentine Ball on the weekend. I kept weighing my choices: I had two long dresses, more cocktail dresses than ball gowns, a new tulip skirt with a blouse I had bought. I spent some time trying them on, looking at myself this way and that. It was the same with my grief. I went back over events and put them up on a hanger to look at them from all angles. Eventually, I would pick the clothes that fit best. I would come to terms with all I had been through.

I dreaded the next levels from here in Dad’s care. I could not find out any information on what to expect. From a Web site I found out what I could expect in the last forty-eight hours. Eventually, it said, cancer patients succumb to a brain hemorrhage as the cancer cells fight for oxygen and destroy the brain cells. I figured that there would be pain, as there was for my mother during the last years of her life. I remembered going in every morning and after school, checking to see if she was still breathing. When I went in to see Dad, he was very still.
~~~~~~~~

Jill Bolte Taylor's stroke of insight \| Video on TED.com
	19 min - 10 Dec 2008 On the morning of the stroke, I woke up to a pounding pain behind my left eye. .... what a stroke of insight this could be, to how we live our lives. ... www.ted.com/index.php/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

pain begins in earnest

2007-02-06T07:39:00.000-08:00

This was the first time that I clearly understood that my father has pain. I know his arthritic knees have been bad but this exceeded anything that has gone before. I sat down on his bed and drew his wheelchair over to be closer to me. His hands were freezing cold and his sweatshirt hood was up. He looked like a wannabe street kid. Very thin and his eyes hollow. I covered him with his wool blanket. I put up a few more Valentine decorations. The sun shone through the red heart-shaped lights. He had moved his chair across the foot of the bed but it was stuck at this point. I was putting up hearts, a large stuffed fuzzy red rose and rearranging the window. I had bought a soft, heart-shaped red pillow from the grocery store, of all places. I put it in his lap. He did not seem to understand what it was. I hung it on a hook, meant for a wreath, that I had hung over the door. It had held his Christmas wreath. It was a bright red spot in his room. It cheered me and I have been told that it cheered others. It shows that someone cares.

He proceeded to leave the room as I was trying to visit with him and I was perched on his bed. I lowered the bed, since it was raised to get him in and out of the chair lift. I kept asking him where he was going. I wasn’t sure if he thought that he had to go down to dinner, since I was there and I always fed him dinner. He kept going out the door. A respite worker was walking by. He said, “Hi. How are you?” She spoke to him for a few seconds. I laughingly told her I was trying to visit and he had left me alone in the room! I left him there while I finished up his window. When I brought him back in he was becoming more agitated. He seemed sedated, but in pain. I held his hand under the blanket. He kept pushing up with his right arm – as if trying to escape some pain. I asked him many times and many ways if he was in pain.

“Are you in pain.?” Pausing for a response. “Does it hurt?”

I clearly enunciated each consonant and he kept asking me, “Pardon?”, turning his bad ear towards me. I wondered at this!

“Do you want a pill for pain?”

“A pie for pay?”

If I weren’t so upset and worrying what to do it would have been funny. There is no way he can understand. Eventually, however, it became abundantly clear. He kept saying, “Ow! Ow!” paired with a sucking in of breath through clenched teeth. This time I went to find the nurse. There are several levels of nursing care. There are nurse who give out the medications. There is a Charge Nurse who is above her and is “in charge”.

I found the floor nurse and spoke to Heather. She obligingly came down to dad’s room. One of the ones with a wonderful bedside manner, she must have spent fifteen minutes with us. She went through, feeling his abdomen to see if he had any reaction and, therefore, pain in that region. He did not wince at all and so she kept at it. I pointed out the huge concave places in his temple, lovingly smoothing it with the back of my hand and he winced. She kept asking him if he had pain, hurt, an ow but he couldn’t hear the words. We ran out of synonyms. She felt his head: the top, the sides, the back. We thought he might be having headaches since there was no indication of pain elsewhere.

At the very least he needed something. It was an hour before the next meds were to handed out. At this point he was getting clorazepam (Ativan) to reduce the agitation, as well as the pills to prevent seizures (Dilantin). The clorazepan had calmed him down enough, but it wasn’t a pain medication, as I had previously thought. She went down and got his regular meds and crushed them and mixed them with applesauce. These days it was hit or miss whether he chose to take them. I was worried. She smiled at him and tried to coerce him into taking them. Eventually, as I stood behind him with baited breath, he took them. I thought that sometimes he refused to take them if he knew I was watching. It was hard to say.

It was time to change his meds. She told me that we would have to get a doctor’s orders to up the medications for pain. She asked if I had talked to him at all. I told her I had seen the doctor doing rounds the previous Friday but we hadn’t really spoken, She asked if we had had a case conference and I told we had, but the doctor was not there since it was the day of the accreditation meeting. I asked how I would be able to talk to the doctor to ask for a pain prescription. She willingly wrote a letter, to be delivered when the doctor came in again. Although he wasn’t scheduled to do the second floor for a few days, he was coming in to do rounds on another floor.

All the way home, driving through the snow covered forests, I worried about what to do. When I made it home, obviously agitated, I looked up the doctor’s office number and phoned. The office was closed, to reopen later that evening for a walk-in clinic. I knew, from the Family Council meeting, that the charge nurse was the person I could speak to and I phoned the front desk. Jackie said she could put me through and I talked to Barb, the charge nurse. She said there was no problem in phoning the doctor. She would phone me back with a report later. Sure enough, after a few minutes she phoned back. The doctor’s office was closed but she had left a message at his home to call her. Barb said she would let me know what happened later. Eventually she phoned me back again and reported that the doctor had given order for Percoset, which would help dad with pain. Percoset, which I looked up in my pill book, is acetaminophen with codeine – prescribed for mild to moderate pain. I hoped it worked. I decided I would go in early the next day to see if it was working.

Caregiver Stress

2007-02-03T08:38:00.000-08:00

I woke to a beautiful day. The wind was blowing long strands of clouds across the horizon. The sun was just peeking up and had painted the bare spots a golden glowing orange. Once the sun rose fully I could see that the over night storm had sprinkled icing sugar snow on top of all of the branches. The wind picked up and sent swirls of snow flying away from the trees. Little whirlwinds of this icing sugar flew across the lake as the winds pushed the snow away. It was as if a giant was lying down on the frozen ice and trying to clean off the snow-covered lake.

We took a walkabout and laughed as we tried to fight the double digit minus temperatures, and the wind as it blew us about. The trees rained snow as the wind kept up. Soon, the snowmobiles came out to go back and forth over the frozen lake. I hope it is frozen, as we lost a couple of men in the water last week! They were traveling to a job site across the water. It is a good thing they weren’t tourists as that is bad for industry around here!

We took a break from dad today. I went into town and spoke to Carol, whose mother has been incredibly ill for seven years. Carol has such an incredible wise woman spirit. I love visiting her and her shop. She told me that she often wrote a journal during busy times and her mother’s hospitalizations. It is a great way to keep track of the progress of a disease. Often one cannot remember what a doctor says. Times are busy and the brain gets over loaded with too much information. She wishes us well and that positive energy I take with me. I do not think that many people realize how much they contribute to the great energy and spirit they contribute that helps me through the day.

Stress is a difficult thing for caregivers. It is important to take breaks. There are agencies that provide both respite care and relief. Most caregivers are women and often have other family responsibilities. I have published an research paper on this. Created when I was doing my M.A. in counselling, a group assignment.

Signs of approaching death

2007-02-02T08:31:00.000-08:00

The Canadian Cancer Society (CCS) is going to provide me with a volunteer who has gone through a situation similar to mine. They sent me some information on what to expect at the end of dad’s life. So much on the web talks about care after treatment and does not provide details that will help me in predicting the end. I could tell that my mother was dying, although no one dare say it. She denied it until the end. There are many symptoms related to treatment: speech difficulties, communication disorders, seizures, lethargy, depression to name but a few. I wanted to face reality but I had to respect my mother’s right to denial.

The signs of death are common to many illnesses: lack of appetite, lethargy, increase in time sleeping, apnea, insomnia, and his oncologist suggested that when he was sleeping 50% of the time he might have a month left.

I read something in a handout from the Canadian Cancer Society Information Service that in the case of a brain tumour one should raise the head of the bed of the patient to prevent some symptoms. I wonder how I can get that message across to all the caregivers that serve my dad and meet his needs. They publish numerous materials and dad had a handbook that I do not think anyone read. It gives great details on the brain and brain functioning. We do little for those assisting in palliative care. We rely on not-for-profit Transfer Payment Agencies to meet the needs of such clients and families.

Gaunt & Miserable

2007-01-20T08:20:00.000-08:00

Dad was sitting gaunt and miserable in his chair. The Valentine decorations were shining in the sun, the light passing through the red candy-like lights in his window. I didn’t think I would last until lunch. I had brought juice boxes for Mirabelle and decided to see if dad wanted some juice. He did. The abscess or indentation at the side of his head looks deeper, but I cannot tell for sure.

The PSW told me that he was not eating breakfast. The last time I visited they told me he ate a good breakfast, but usually only had one good meal a day. She wanted to mash up his food, as staff think he isn’t able to chew it. He refused to take pills from her. She asked if I would give it a try. He refused again. The pills were ground up and put into a spoonful of applesauce or pudding to make it more palatable. He had been chewing his pills for that past month. They are quite creative in figuring out how to encourage him to take these meds: ground up in applesauce, pudding or snuck on a spoon. Bless them every one!

I told the nurse that I thought dad needed to see that he was eating real food, today it was ham, and I didn’t think he wanted it minced. Only old, sick people have that done for them! I was right. Dad refused to eat any of his meal. Dessert was another story. “He’s a great dessert eater!” one staffer told me.

Today I gave dad a Ghiardelli chocolate when I arrived. Brian and I visited San Francisco, where these chocolates are made, back when we could more freely travel and take weekends away. They were on sale after Christmas and I knew that my dad was worth it! It was a terrific visit to a lovely tourist area. The chocolate factory has a large sign, unmistakable to those visitors who are keen on such tours. We took a boat tour of the harbour, strolled around the boardwalk visiting expensive, but entertaining shops.

Brian bought me my football ring there. We spotted a beautiful ring, carved from bone, surrounded by turquoise stones. He asked if he could buy it for me, in exchange he wanted to follow the 6 football games on the next weekend. What could I say? He bought me a wonderful, multi-coloured long wrap that I wear frequently to the nursing home. The senior ladies ooh and aah when I dress up in overstated clothes. I am happy to be the focus of their attention.

The San Fran visit was a fond memory of times when weekends away did not make me crazy. I worry so that dad will need me. It is hard to balance family in this sandwich generation. Once my father passes away we will be able to travel, aside from the cats. When the good weather comes back we will be able to invite friends, too. I miss them a great deal. Our big trips to the small towns around make us happy. We have found favourite restaurants, many closed in January to give staff a much-needed break. I know spring will come.

Long Term Care Act: Bill 140

2007-01-18T11:51:00.000-08:00

Another meeting has called me. Today the Family Council for Leisureworld was meeting. These councils must exist, according to Ontario Ministry of Health and Long Term Care legislation. I thought I would attend, since Brian had physiotherapy in town. I came out of the meeting the Chair of the Council. It would keep me focused and give me some real work to do. They are advisory boards to be a voice for those who could not voice their own issues. It was made up of family members of residents. Before the meeting I popped in to see what dad was up to – he was asleep. A worker told me he had refused breakfast.

The meeting went well. They have some concerns about the new LHIN committee and the legislation: Bill 140, the Ontario Long Term Home Care Act. Typical of politicians: they dream up new rules, with no money to support the institutions, which must fulfill the new policies. The bill was created because of a media release of a videotaped physical abuse incident. Again, a knew-jerk reaction to an event - the politicians must not do something worthwhile, they simply must be seen doing something about a problem. They want to rush this legislation through and have given little time for discussion. There would be a provincial election soon. The legislation was put forward by one person, given the task of coming up with a plan, she responded with something to make the politicians look good.

Bill 140 demands more vigilance, more red tape and more rules. If staff was not already following the rules, then what was to prevent them from doing the same or worse, despite more threats of funding cuts? Ontario standards provide for 2.5 hours of care per day per resident but this lags behind Manitoba and Saskatchewan, who both have over 3 hours per day per. Staff are already hard pressed to meet demands.

Issues revolve around the lack of staff.

Refusing to eat -

2006-11-17T11:01:00.000-08:00

Dad is asleep. He has his new pants on and his slippers. There is a company that produces great clothes for the aged and infirm. They have snaps in the back and back closings. I bought him a pair of slippers that will fit his swollen feet, with Velcro and flaps on the side. They are very easy to slip on. His hot water bottle has disappeared. He woke and Heather helped me put some clothes on him. He went back to sleep.

I wheeled him down to the Muskoka Room. I tried to wake him two times but there is an imperceptible shake of the head “No!” to food. I tell him I’d leave, but first I cut up his meat for him. He will not wake up much. Just dozes with his head on his chest. I moved his chair backwards. He keeps his head forward. When I brought dinner he slightly shakes his head no. He does not want any. It is a nice cheese-stuffed veal. I decide to cut it up for him and leave. I am so drained. I leave to talk to Mirabelle. When I came back, after saying good-bye to Mirabelle, there is a cute, auburn-haired PSW feeding him. She speaks to me through the glass and says he just started eating. I tell her that he is angry with me for putting him in this place. He ate some of his dinner as she gives him some attention. Good for her.

Brain tumour is taking over

2006-11-10T10:57:00.000-08:00

Off I go and trundle Dad down to his dinner room. His brain tumour is growing on the left side of his brain, the scar from the staples still evident three years later. Dad is slipped over on his right side. I cannot feed him in this position. I ask a support worker to help me prop him up, now that I know how to do it with another person. When she walks into the room with me Dad seemed to say, “Bitch.” but I am not sure! I keep carrying on.
I put on the radio but cannot get a clear station. This room is used for crafts and visits from family and friends. I could have had the radio on all these months. Often the residents are in front of the TV just before dinner and I cannot choose a channel that I would prefer to news. As staff slowly wheel residents into the dining room, I often pop in this anteroom to change channels, if Dad doesn’t miss me. He gets upset when I disappear.
It is veal for dinner. It looks like meat and so I hope Dad will eat it. I brought him an orange, as there is never any fresh fruit around at dinnertime. I am trying to cut back on protein myself and think that sharing an orange will be good for us. When he saw it he says, “That’d be nice!” Dad munched a bit and says, “Did you wave to her?”
I reassure him, “Yes!” although I am not sure about his meaning.
“Did they say anything about half -past?” He is in a world of his own. One just must respect that. He refused the veal, although it is breaded and stuffed and seemed quite nice. I tried a piece, thinking it will incite him to eat. No dice. “Sorry about that.” he says.

Beard trimming 101: THe big event

2006-10-28T13:45:00.000-07:00

Brian popped in this morning to visit Dad. We both thought he needed a beard trim. Dad didn’t like anyone touching him anymore. Brian had a wicked cordless electric beard trimmer with an attachment that gathered up the clippings. He took it in to work on Dad, but the batteries died. I needed to give it a go. I was not used to this trimmer, but I did have a hair trimmer I had used on my children’s hair. How hard could this be?
I popped in early to do our evening dinner ritual and routine, trimmer in hand. Dad spoke as if there were marbles in his mouth. I was looking at his beard. “I think we need to trim it! “
“I don’t know. Pieces, suspended on the--”
“Yeah. Brian did his beard this morning. “
“I had three oh packages of it.” He sounded drugged, which was okay. I still suspected that he was in pain, hence his vocalizations. I was not sure.
I could hear Marjorie across the hall, yelling “Help!” as she did continually, in her state of dementia. “Help me! Help me!” Sometimes she would sing the words.
Dad was lying in his bed. Dad seemed calm as I cleaned him up and prepared to trim his beard.
“Do you have any bacon?”
“Yup,” I say, knowing he means scissors. His inability to retrieve nouns did not faze me anymore. I did not correct him. “I’ll get a towel.”
“You want to know. Not what you left. A get back to get up.”
I sat him up, cranking the head of the bed. He gave a big yawn.
“I did not have any relax.”
“Oh, no?”
I started trimming. It was quite long, with his mustache growing into his mouth. I was tickling him, and he moved away. “It’s okay. Sorry, I’m tickling. I’m doing my best, but not giving up my day job, though.” (Oops. Actually, I had.)
I kept working at the beard project and I was relatively successful. It was a bit crooked, but better than it had been. He tended to get so much food into his beard and mustache that it helped if we kept it short. He had always been so meticulous with his appearance. He and Mom had made regular visits to the hairdresser. Dad always got dressed every day in a shirt and pants.
As I worked at his beard, the PSWs came in and asked if I wanted them to get him up. I told them that he would be ready shortly. Off we went to dinner again.

Choking & Swallowing

2006-10-22T10:39:00.000-07:00

Dad greets me with a kiss today. Three times he tipped over in his chair. I think his equilibrium is gone. He juggled right-of-way with another resident, Tom, in the doorway as he tried to leave the sitting room. They are crashing about with wheel chairs, running into one another. He became angry, “I can never do anything well, dammit.” How do I recall for him the home repairs he had done, the work he did over the years, the care and love and the attention he lavished on his family?

He chokes on his milk and he cannot swallow properly. He recites “555”, the first three digits of his home phone number. I leave to get his third cup of milk and when I return he is surprised that I am here. He says, “Oh. Look who’s here!” As if I hadn’t just fed him two cups of milk. He insists on spearing his own meat that day. He manages to get three pieces into himself. He had much trouble doing it. “Shit. Nothing’s worth a shit.” as he misses the small piece I had cut for him. He drank four glasses of milk that day. He is quite thirsty but I fear that he will choke to death and the newspaper will say, “Daughter stands by while father chokes to death on milk”.

Swallowing difficulties are called dysphagia and they are a common result of neurological or neuromuscular damage. At the time I had no idea that it is something to be expected. Large percentages of people with strokes, Parkinson’s disease, MS have this symptom. Those with structural damage include people like my Dad who have tumours. Swallowing is a complex process that involves 26 muscles. It is uncomfortable and frightening, as well as life-threatening because dysphagia interferes with the oral intake of food and medications. Long-Term Care Best Practices says that up to 70% of residents on LTC have signs of swallowing problems. This can result in aspirations, choking, suffocation, dehydration, malnutrition and decreased quality of life.

Dysphagia – choking and swallowing issues

The Regional Geriatric Program publishes an e-zine called BP Blogger. One issue deals with swallowing. The web site has a lot of information.

Signs of Swallowing Difficulties
• Coughing when eating or drinking
• Food or liquid spilling from the lips when eating or drinking
• Trouble moving food or liquid around in the mouth
• Prolonged chewing
• Trouble starting to swallow once food of liquid is in the mouth
• Clearing throat shortly after a meal
• Has a wet or gurgly sounding voice
• Complains feeling that something is “stuck” after swallowing
• Shortness of breath during or right after mealtime
• Has frequent heartburn or bitter taste in the mouth
• Unexplained weight loss
• Recurrent chest infections
• Refusal to eat or reluctance to have food in the mouth
• Pocketing food or liquid in the cheeks or holding food in mouth
(Reprinted with permission)

Case Conference for Dad

2006-10-15T10:32:00.000-07:00

The law states that there must be annual case conferences for residents in Long-Term Care (LTC). Today is the day. Aside from the intake meeting, we keep careful tabs on my father. There is little we do not know. We find that popping in at different times of the day has keeps us apprised of different issues and situations. We have met various staff members who work on the different shifts. Aside from coming in every day to feed Dad dinner, we pop in if we are in town for an appointment or an errand. I have come to know the reception staff. They are very kind. We share stories of parental issues. One woman has dealt with these very issues with which we now deal. Her mother would refuse food in her presence and eat later. Her mother agitated when she is there visiting - perhaps blaming the daughter for the frailties of old age and the insult of leaving familiar surroundings.

Today there is an accreditation meeting for the nursing home. Our case conference conflicts with this event. Dad’s doctor, who is responsible for the entire floor of patients, sees us in the hall outside the nursing station and apologizes that he cannot make the meeting. We went upstairs to see Dad before the meeting. He sees us and says, “What are you doing here this early?” It is 10:20, just before our 10:30 meeting. He must have some remaining sense of time and that we visit at dinner time on most days. He cannot really understand what I am saying – that we have a meeting, maybe. He is talking gibberish.

The case conference is in our familiar Muskoka Room. I have taken Dad down the hall to where our meeting will occur. As a teacher I always included students in our parent-teacher meetings. I think it an important thing to do. It is a small conference with the charge nurse, and another staff member, a PSW unfamiliar with dad’s case, and us. They tell me Dad has been aggressive with a caregiver. He was agitated and grabbed her arm. They tell me he is refusing a bath. He did this for two weeks at the Manor in the summer. This is not my father. As we talk Dad wheels his chair around the large, heavy pine table. He gets caught up on the table leg. He is talking out loud. “What do we deliver to?” And later, “Where can I go to a radio activity team?” I sit and write these things down as we talk. It gives me a focus and a purpose. I find it surreal, these interactions. I bought a spiral bound book to record all the information.
The PSW suggests that we get Dad involved in some activities. He cannot hear. He refuses to interact when he is embarrassed. They suggest music therapy. Dad loves music so very much. If he can only hear that might be a good bet. I ask if they can arrange to have the resident hairdresser cut his beard weekly. It grows so quickly. His hair, on the other hand, what is left of it, is straggly from the radiation treatments in the spring. It is very fine and wispy. They tell me about the massage therapist, as well. I knew she existed. I had previously contacted her and ask that she try a visit once a week. It might help his circulation and improve his well-being. I have questions about dad’s medications, but since the doctor cannot attend the meeting I will have to try and talk to him later. This proved the most difficult challenge of all: trying to talk with the busy doctor, especially at the most crucial times. He is only in the residence once a week.

Eventually, I learn that the best person to talk to is the Charge Nurse when I visit at mealtimes. She knows more of his behaviour and can speak to the doctor on our behalf. We have full power of attorney, both medical and personal, as is the case with about 90 % of the residents in this wing. I began to suspect that Dad is in pain, but cannot be sure. I had to figure out what to do with this information. They can give him Tylenol 3, but, since he has had arthritis pain in his knees for years, I think it will not have much of an effect on him.

Thanksgiving Dinner

2006-10-09T10:25:00.000-07:00

Today I went in to visit dad. As always, the building is beautifully decorated. There are many Thanksgiving symbols and decorations. As I approach the front walkway I see huge bales of straw, with stuffed Wizard of Oz people made of hay, pumpkins, and bright orange ribbons. The activity staff put up cute little turkeys, too. Indoors, the floral arrangements are in tune with the theme and fall colours. It is cheery and a recognition of the changing of the seasons. I must dig out some decorations for Dad’s room.

The kitchen staff prepared a wonderful dinner. Brian doesn’t like turkey and so I am quite envious of dad’s full dinner; turkey, stuffing, hot vegetable and pumpkin pie. We will not eat so well, as there are only the two of us. We are drained with the demands of regularly feeding dad. I have found it much easier to visit Dad and feed him at dinnertime, rather trying to drum up conversation. I have the need to cry when I visit, but I can fight it if I concentrate on meeting Dad’s dietary needs. It means that Brian and I often go out to dinner after this, since I do not get home until dark and too late, with little energy to cook.
I sit there thinking of the numerous turkeys Dad had prepared. His job is to put the turkey in before church. He will quietly go about the kitchen making the stuffing; cooking and saving the giblets for whichever animals he had at the time. The cats loved them.
One of the photos I displayed for Mom’s Memorial Service visitation is one that shows them two years ago, aprons tied, Mom at the sink, Dad at the stove. He wore a bright pink vest over his dress shirt. Mom wore a white, embroidered sweater. Both dressed in black dress pants. They always take pride in their appearance. They hated it when people popped in, especially when they become so ill. Mom spent all day in her pajamas, as the tumours are painful and her colitis horrible, with emergency visits to the bathroom on an irregular and unpredictable basis.

Dad is calmer today, Monday, than he was on Sunday. He can’t figure out the hearing aid. He keeps turning up the volume, making it squeak. He reads lips a lot. He loves the ladies: cheering up every time a young caregiver pops in. He smiles and turns on the charm. He seemed to accept being fed as a gesture. It is only fitting that the person that nurtured and fed me should be, in turn, be receiving such care. I cry on the drive home, for moments lost to memory, never to be repeated. A childhood remembered with great joy. The photo shows them making the last Thanksgiving dinner they ever made. I will become an orphan. I am now the matriarch. How different it all feels.

Incontinence

2006-10-02T10:23:00.000-07:00

Brian arrives before 8:00 a.m., in time for breakfast. Dad ate a double ration of breakfast. All seems much better. Perhaps, as the Charge Nurse says, he needs to become acclimatized to his new surroundings. When I arrive at 3:30 in the afternoon he is sleeping. I walk into the room and he is quiet and peaceful. He is now incontinent. Depending upon others to clean him up and change his adult diapers, bedclothes and clothing. When he awoke we tried to communicate. He tells me, “You don’t have to do laundry.” As always, I just nod and smile. There is a time, before Mom and Dad deigned to purchase hearing aids, that Mom will nod and smile to everything I would say. She really did not hear what I said, but does not want to admit that she could not hear us. What a weird turn of events.

Selective Hearing

2006-09-28T10:17:00.000-07:00

When Brian arrives for dad’s breakfast Dad is trying to get out of bed. Brian tells him to wait for a nurse and that settles him down. They do the two-person lift and put Dad in his chair. While he waits Brian tidies the room. He knows how much Dad likes things neat, having helped him tidy up his room at the Manor. Dad is ranting about the mess in his very small, simple hospital-like room. Dad has two dressers, one wardrobe; his TV sits atop one dresser. We placed three paintings and photographs around the room. I have bought a plant, with a big yellow bow for the bright window. Dad loves his plants and flowers. I know I married my mother, she and Brian joked about the preponderance they had for liking things just so. I am a clutter freak and Brian is a neatnik.

Brian manages to get Dad to eat a bowl of porridge and drink two glasses of orange juice. There are no eggs and Dad is really pissed off with this. He complains to Brian that he is feeding him too fast. Also, Brian changed spoons and that pisses him off, too. This takes me back to looking after my children as toddlers. Things had to be just so. They cannot tolerate any change in routine. They had a routine and a rigid expectation. It makes everyone feel better to know what to expect. It breaks my heart that Dad has to be there. We cannot cope with his intense needs at home. I have talked to so many women who care for ailing family members. The difference seems to be if both spouses are alive – they can cope or stay in denial about it. It puts a huge burden on daughters and neighbours, however.

Dad’s hearing aid is broken. It was lost, and has been found, but it is really broken. Communication is a very tricky proposition these days. We know that Dad has big problems with the small size of his ear canals. We do not know if this is due to his brain tumour, his brain swelling, or exactly what. The end result is the same. We must yell into dad’s ear to make ourselves clear. We do know that he has selective hearing. While he is quite upset with us, when the cute blond nurse comes by and cheerily asks, “Are you ready for your pills?”, he responds with a big smile. He is a wicked flirt! Again, the tumour and the dementia is removing his inhibitions.

Mom and Dad fought against hearing aids many years ago. They spent a long time in denial, and learned to read lips quite well. It is so ironic that I recall Mom fighting with her Mom to get hearing aids, many, many years ago. Hearing aids these days are quite small and make a huge amount of difference. Friends tell me that they have fought the same battle with their ailing parents that their parents fought with their grandparents.

Brian takes the one remaining hearing aid away to the hearing aid store. The young lady, Terri, has been very good about cleaning dad’s hearing aids. She come to mom’s funeral and popped in at the visitation last May. The cleaning cost nearly three hundred dollars. She tells Brian that dad’s hearing is 75% gone in his left ear and 25% gone in his right as of a hearing test two years ago. This explains a lot of our troubles. Dad, in his times of dementia, turns the hearing aids up so loud that they whine and buzz at a very high frequency. It disturbs many people around him.

Communication?

2006-09-27T10:16:00.000-07:00

There are two emergencies at the Long Term Care Facility this morning and Dad is late getting up out of bed. Brian reports that he is alert and feeds himself, which is a good thing. I do not know how Brian finds the patience for all of this. He never knew his father. He’s never been a father, although he is a wonderful stepfather. He tells me his arm gets tired and his back hurts from sitting at a difficult angle in order to feed dad. I am so proud of him.

Dad takes three pills at 8:00 a.m., and takes them easily from Hannah, the young, attractive charge nurse. She tells Brian that he ate his hamburger yesterday. Dad and Brian talk about hockey. His noun retrieval is better this morning. Yet, he is telling Brian that there are two dogs that don’t like him. He is talking about a dog named Barbados. Can this mean Bandy? We do not know. He tells Brian that he is “stupid and cannot get the word.” This is what he started saying in previously when he is in The Manor – that he is “stupid”. He has forgotten that the brain tumour is taking his mind. Dad groans a lot when he is moved.

Brian lets him do everything he can, which gives Dad confidence. When Brian puts on dad’s bib Dad is unhappy with that. He put it on his lap, instead. Brian knows Dad is late for breakfast and he put dad’s robe on backwards, in order to get him down for breakfast in time. After lunch Brian washes Dad’s beard. Dad uses Brian’s proper name several times and thanks him for coming in. His hearing is particularly bad today. As we visit we continue to talk to him as if he can hear. It gives some semblance of normality.

Physiotherapy & Dieticians

2006-09-26T10:15:00.000-07:00

The things my father says truly embarrass me. I know that his inhibitions have been ravaged by the disease and the indignities he has suffered. There are strangers wandering in and out of his room, wiping his mess from either end, changing his clothes, taking him down to meals he would rather refuse. Other residents wander in, too, lost and alone. Their dementia is an unseen issue in their daily lives. Dad speaks in full sentences to Brian, refusing toast and waffles. He speaks of care staff with the cheekiness that only the aged can display. “Here comes the fat one.” Or "Here comes the old one.” He eats his eggs, though.

The physiotherapist has a conversation with Brian, who has taken much of the advocacy burden from me. Brian looks more like Dad than I do (I am adopted!), with beard and baldhead. Katherine wants to give Dad some physiotherapy to help him to more easily transfer from the wheelchair to the bed. Brian says that we need to refuse this help, since making Dad stronger in this activity will only jeopardize his safety. Dad is in palliative care, we have to reassure them, and this is a different situation than most of the other residents. Dad will not get stronger. He will get weaker and requires two people to lift him now. There is no sense in helping keep up his strength to defy the care staff.

Brian has a conversation with the dietician. She has found that Dad seems to like to have an egg a day. Brian feeds him breakfast on a daily basis, and this is what he wants. The dietician is concerned with his cholesterol. Again, we explain that he has been given a final prognosis, the brain tumour is inoperable and untreatable, and we want him to be happy eating whatever he wants to eat. Like a teenager with anorexia he has been asserting his will around the issue of food. It is the last stand for dad. This reminds Brian of his stepfather, who was in a nursing home with Alzheimer’s Syndrome many years ago. They wanted to put him on a diet, as they are worried about his food intake. Again, let us just keep him happy.

At home, alone in the solitude, I began the day by wrestling with Bell telephone. Dad’s phone has been disconnected, he cannot use it properly anymore, and yet he is still getting bills. Dealing with Bell has been incredibly frustrating. The company is too big and no one seems to know what is really going on. The same is true for mail. We get a continual assault of mail directed to Mr. or Mrs. Jilks. It has been my job to weed out the junk mail and the solicitations from the various charities with whom Mom and Dad communicated. “Admail” cannot be returned. These are the bulk mailings that companies send to us all. They are unreturnable, due to the cheap rates for this type of mail. Opening the mail I scrawl, “deceased” on the form begging for donations, and return it to the charity. It is difficult to do on some days.

The White Board

2006-09-24T10:14:00.000-07:00

When Dad was in the Manor we often wrote things down for him, since he could not hear us. It became humorous as he would reread notes previously dealt with and would forget that we had moved on with the conversation. I should have taken the scraps of paper and filed them. We have to scrawl over the old notes so as not to confuse him during our written conversations.

Brian’s brilliant idea is to put a small white board in Dad’s room. This way he can write down what it is he wants to communicate to Dad and Dad can respond orally. I have heard other families use this method. It really works well, since one simply erases the message to write the next one. Unfortunately, Dad is not quite clear on some concepts. After a time he lost enough of his cognitive abilities that it became useless and then he lost the pen. Back to the drawing board and square one.

Anorexia

2006-09-13T08:48:00.000-07:00

His walker, missing yesterday, has been returned. The PSW tells me that Dad has been up at night. He tore up his room, they tell me. He is wandering down the hall. The charge nurse tells me that they give him some Ativan to calm him down. I think I could use one. I wonder what all these drugs do to him.

Lately, after checking with the dietician, I know now that Dad has only eaten about 25 % - 50 % of two meals in two weeks. They keep careful records and weigh the patients regularly. He is refusing most meals. He is still refusing his bath. It must be scary. A big, new room with strangers lifting him up in the hoist isn’t the easiest of scenarios. He grabbed the arm of one of the attendants in his fit of agitation. They decide to give up the bath notion.

Signs of Pain

2006-09-11T08:46:00.000-07:00

I toddle off to school, to spend the day with my wonderful students. They are ready for anything with their whole lives ahead of them. I continue to wrestle my demons as I question my ability to do my job. I drive home with the CD blasting great tunes, sailing past sparkling lakes, turkey vultures as tall as the hood of my car who watch me pass, trees dancing in the wind and the wind messing my hair, only to arrive home to more bad news from Leisureworld via Brian. Today Dad wanders down the hall, still in his wheelchair. He cannot walk on his own and has lost the ability to move around easily. He ends up pulling the fire alarm. I am mortified! At least I know they cannot kick him out of this Long-Term Care home.

I worry about having to restrain him. He is terribly confused and groaning a lot. We do not know if he is in pain or what we can do about it. The staff give him some Tylenol to ease his pain. It might simply be his knees that are agonizing him, but, again, we do not know. He cannot communicate this to us. Brian has been going in every morning after breakfast to feed him. He sends me off to work and then goes in to see dad. Sometimes Brian leaves the house before I do to get Dad up in time for breakfast.

Pain is not a normal part of aging. It is fairly common in Long-Term Care Homes, and ought to be addressed. Chronic pain is pain that persists for 3 to 6 months after it is expected to, after healing from something. Persistent pain is pain that lasts longer than a month. Dad has always had persistent pain, due to the arthritis in his knees, and this has never been adequately addressed. All of us tried many things but did not find relief – or he give up. He bought the magnetic wraps that are supposed to help, but gave those up. In the summer we put some topical ointments on his knees. After the radiation treatments on his forehead he put some of this, accidentally, on his forehead when he isn’t thinking straight. In the past Dad indicated pain, but he is beyond that now.

There are non-specific signs of pain: frowning, grimacing, grinding of teeth, fidgeting, bracing, rubbing, striking out, increasing or recurring agitation, poor eating or sleeping habits, sighing, moaning, groaning, decreasing activity levels, resisting particular movement, change in gait or behaviour or loss of function. Dad had all of these and, in hindsight, was clearly undermedicated.

School and teaching continue to give me stress. My hands continue to shake. I have gained weight. I am constantly fighting with either anger or fear, self doubt and insecurity. My boss has been vigilant in disciplining me for errors and correcting my anticipated bad behaviour. I understand, having been through the principal’s course, that it is up to the school leader to help teachers become the best they can be. I wonder if I am adequate as an educator. I have little self-esteem left. I have headaches and have had insomnia for months. I feel helpless and have no control over my own curriculum. The hand tremours began in May or June. I cannot remember exactly when they started. Things are such a battle with fighting for care for my mother. I need to stay home for a few days.

Stress Increases

2006-09-07T08:30:00.000-07:00

School carries on. What beautiful country it is here. Our class rides on a bus into Parry Sound through hills and valleys, through forests, big rock cuts of pink, grey and white granite. I take the students to the park for their swim tests. My class consists of a wonderful group of grade 8 students. It is rare to find such a congenial group. It is a blessing, since I am stressed beyond belief. My biggest problem remains what NOT to teach, an article I published on my website. There is so much we could do, but we must focus on the assigned curriculum.

As we work through the History textbook I begin to question the purpose of it all. What meaning does this have for these young people? Many cannot read the text. I am faced with students with varying abilities and interests. With huge social, emotional and cognitive needs I wonder if I can do it. I am hard pressed to wonder how to make this work interesting. I used to love what I do. I am well respected in my previous school board and assisted other teacher with their special needs students. I am having a great deal of trouble making decisions and dealing with day book plans, seating plans, the requirements of the principal for special needs students, curriculum plans and the bureaucracy of this work.

When I arrive back at the school, after this beautiful day on the shores of Georgian Bay in Parry Sound, I dismissed the students. My principal has left a note in my mailbox requiring my presence in her office. How peculiar as I examine my feelings around this: being called to the office still, at nearly age 50, gives me butterflies in my stomach! The principal calls me in to talk to me and tells me that she is very upset with my timetable. I had been over it several times and have revised it, even though we cannot stick to it since the camping trip dominated most of our time in the first two weeks of school. Any timetable must be tailored to the particular class, as each classroom is made up of particular characters and must be influenced by learning needs, learning styles and learning abilities. I begin to question my abilities to manage the classroom to her satisfaction. This aside from my fears about my ability to actually create a curriculum that is meaningful and effective for these students.

As the stress increases I realize that I may not be able to cope with teaching. Workplace stress results in 35 million workdays lost each year, according to the Alberta Mental Health Board (AMHB). Mental illness accounts for up to 40 per cent of short-term disability insurance claims and 50 per cent of long-term claims. I know I am not alone in feeling depressed. I know that my situation is out of my control. My pressure at work is causing me more stress than I can imagine. It used to be a safe place where I could escape my worries over my father and deal with an incredible class of young people.

In the publication by the AMHB, they cite a Toronto-based Roundtable on Addiction and Mental Health report. This publication states that employees in the workplace who report a “consistent level of stress” are twice as likely to become depressed. They go on to say that stress in the workplace has been narrowed down to ten key factors: “lack of control over daily tasks, office politics, lack of communication, inconsistent or unreliable performance reviews, work/life conflicts, lack of company leadership or direction, unclear job expectations, random interruptions and unreasonable workloads.” I know I am well up on this checklist. I wonder if I shouldn’t find someone to talk to again. I am worried about going to counselling through the Employee Assistance Program (EAP) again. I let it go.

Hearing Aids Cleaned

2006-09-06T08:43:00.000-07:00

Day 2 of school and with me having huge responsibilities at school: new school, new community and new curriculum, Brian has taken responsibility for checking in on dad. He cares for my Dad as if he is his own. With much experience in caring for his late mother, as an only child, I am blessed with his knowledge, understanding and physical and emotional support. Brian reports to me from Leisureworld from his daily visits and I write all of it down. Dad’s inability to hear us has become one of the worst of Dad’s issues.

Dad has been so frustrated with his hearing or lack thereof. He had been having his ears cleaned weekly, after much muss and fuss. In the Long Term Care Home, however, this service isn’t available as far as we know. The Manor is taking him by mini-bus to the doctor, who will do this for us. Funding allocations for LTC residences include staff funding of 2.5 to 2.6 hours per resident to get them up and ready and into the dining room for meals, washing them, meeting their needs and giving them snacks. It is barely enough and less than other provinces deem minimal.

For each resident in BC, Alberta, Manitoba and Saskatchewan they have a minimum funding per client of 3 hours per day. Recently, pre-election posturing in August, 2006, included a political announcement of 1200 new nurses in the province and funding announcements that will not be in enacted until 2008, and we won’t see a result until 2009. Funding for housekeeping, laundry and other services are running less than inflation. Wages and utilities have increased by 3 % and inflation is increased by 1.6 %. The 3rd floor, for example, with the flight risk residents and Alzheimer’s patients, absolutely needs 3 hours per resident.
While we met the doctor on his intake day, he only visits weekly and they do not have enough time to see each patient during this visit. The government only provides funding for one physician per floor. This will later prove a difficult obstacle. Right now it isn’t too much of an issue. It is the nursing staff that determines his needs, along with our advice, support and guidance.

Brian takes dad’s hearing aid to have it cleaned at the store. It is a bit of money, but worth it. Dad’s ear is raw with scratching it. Everyone says that they have never seen such wax build up and so small an ear canal. I wonder if Dad can focus on this problem since he cannot face his other issues: grieving over his wife, dog, old life and old home.

Visitors

2006-09-02T08:40:00.000-07:00

How nice to have our adult kids visit this weekend. Caitlin and Jean-Luc come all the way from Ottawa. Jean-Luc helped with the cooking, which is a relief. Caitlin and I go into Gravenhurst, while Jean-Luc takes care of our supper. J-L also helps me by putting in a shelf in our bathroom. He is such a good man. I am so glad he is Caitlin’s husband. It is fun showing them how we had renovated the house. I have missed them.
The drive into town never ceases to amaze me with its beauty. Three deer are crossing the road ahead of us. They delicately tiptoe across the road, one at a time, checking both ways for threats – just the way I taught Caitlin to watch as she crossed the street. There are lessons in nature. Visitors must sign in to Leisureworld. There is a register for volunteers, outside professional staff and for visitors. Residents are no longer able to check both ways for danger. In fact, some must be watched carefully as their cognitive functioning is impaired. The staff must do it for them.
There is a keypad with a code for entry and exiting from the facility. This protects those who are at risk for flight. It lets staff know, in case of emergency, who is in the building. Caitlin and I went to the desk and I signed our names, the time of our visit, as well as the resident and the floor on which we are visiting. We put on our badges and went upstairs, using the anti-bacterial agent on our hands.
Dad knows Caitlin – he clearly shows recognition and is happy to see her. We get him organized, drop off our coats, and follow our regular dinner routine, wheeling Dad into the Muskoka Room. Caitlin helps me feed him, taking the spoon from me while I leave the room to get the rest of his meal. She helps by holding the cup to his mouth. Dad’s hands shake so much some days that he cannot hold the cup without spilling. Sometimes he can hold it; other times I keep my hand under the cup, or under his hand, as a safeguard. I have to be careful not to interfere too much. This diminishes his self-esteem and makes him angry if I show him that I do not think he can do something that he is capable of on this day.
Dad cannot hear Caitlin, she has a very soft voice, but he knows she is trying to take care of him. He has been angry with me and this is a blessed relief to have support and a young, fresh and familiar face. We are both discussing his gradual decline on the way home. Not as shocking as for some, since she saw him at his worst in May. Home we went for a delicious meal and some family time. To everything there is a season and I am now the matriarch.

Time for a Wheelchair

2006-08-30T08:37:00.000-07:00

The rules of the Long-Term Care home say that whenever there is a significant incident they must phone the family. I had gotten over the phone calls form Dad. My stomach no longer churned into knots at the ring. It turns out that Dad has fallen again. I had to explain that he has fallen five times in two days in the past while and that it is to be expected. He balance is off and his strength is going. There is little we can do. Unfortunately, he continues to try and get up in the night. He either refuses or does not know to push the call button to get help. He gets out of bed and then falls on the floor. The staff wisely put his bed down as low as it can go and place two mats on the floor. Eventually, he will not be able to raise himself out of the bed. In the meantime, this assuaged all of our concerns.

It is now time for a wheelchair. Brian and I cannot support him enough to help him move about. His balance has disappeared. We must find one somewhere. There are places that rent them, which is what we shall do since we don’t know how much time Dad will be with us. Since he is slumping over so much I worry about him. He seems to lose his balance just sitting and falls over to the side. He has been using the nursing home’s wheelchair but he still has the walker that clutters the room. There is little enough space with the pads they have on the floor. I find it difficult remembering what I need to do for Dad. I make non-mental notes for a frame of reference. I cannot focus much of the time. This is the difficulty balancing home, my husband and adult children, work and Dad’s care.

Dad’s Goes into Long Term Care

2006-08-28T08:38:00.000-07:00

Today is the day. We went over to the Manor and packed up his things. I had made the mistake of taking in suitcases on Friday. It disturbed him so much that the Manor staff take them and hid them. Lord knows he is agitated enough. I thought it would help him understand what is happening. I had so carefully prepared him. He had said, several time, that he isn’t getting the kind of care he wanted here in the retirement home. He tell me so many times that it is great in the beginning and now things had gotten worse. He does not understand that he is the one who had gotten so sick that they could not manage his care in a retirement home. We loved having him in the Manor. People are not as ill as in the nursing home and the care is similar to a luxury hotel. Now that he is refusing meals, baths and generally being so demanding on their time, he needs to move.

Leisureworld is a private institution. There is some confusion regarding public or private setting for care. The resident is subsidized a per deum amount, and then, should she or he choose to, they can put that towards a private room. This is essential for Dad. He is loud and is often awake at night. We cannot allow him to disturb someone else.

We managed to get Dad into the car with some difficulty. He is a tall man and, while he had lost weight, he still is a significant size. Brian drove the mini-van with Dad’s chair and luggage. I drove Dad in the car. The foyer is a lovely place. With a couple of couches and chairs, many flowers, donated by local florists, or grieving families, it is always bright and cheery. He cannot manage his walker and we had to find a wheelchair. He can barely lift his profoundly swollen feet and we had difficulties with the footrests. I wheeled him by the front desk, where II had previously completed almost all the paperwork. We passed the central courtyard. Filled with patio furniture, trees, mature plantings, it is quite nice. They had BBQs there in good weather. It is a peaceful place to visit.

Upstairs we went to Dad’s room. It is pretty stark. It is definitely a hospital-like setting. Bare floors, a simple hospital bed, pine-laminated wardrobe and two two-drawer dressers with a few nails in the walls for pictures. I wrote down a list of pictures to bring and hang up. They encourage families to help make the residents more at home. The window overlooks the front parking and courtyard. I will spend many hours gazing out. The curtains are a neutral brown colour, with a window that, thankfully, opened up in good weather or bad weather indoors. The sun shines into the room, making it bright and give more hope than we had a right to look forward to. I wisely do not take as many clothes in for Dad. He will never be outdoors again and never require a winter coat. We leave those things in our rental locker. He is not hopeful, nor optimistic, nor is he particularly pleased with being there. I take him on a brief tour of the dining room. There are two big dining rooms per floor, with an adjoining cafeteria for food preparations.

Today, Monday is the regular day for the doctor’s visit. There is one doctor for this floor. He usually does rounds with the Charge Nurse, visiting, briefly with each resident and noting their needs. The Charge Nurse can phone the doctor at any time and usually has a standing order for meds as required. The Charge Nurse and the doctor need to do an initial assessment of Dad and they ask me to leave Dad’s room. I stood in the hall.

Each resident has a framed plaque screwed to the wall outside beside his or her door. In this enclosure staff put a brief biography of the residents. It humanizes the person, who is often unrecognizable as the person they used to be. I read some of them as I waited for the doctor and nurse to finish. I prepared one, not as succinct as the others. I am usually accused of being to loquacious in my writing practice.

The Leisureworld brochure suggests that families bring in small personal items to make residents feel at home: pictures, family albums, calendars, TV, radio, etc. Many residents take things out of their rooms and lose them and items must be labelled. Some like to wander in other resident’s rooms and borrow items. This is difficult to control.

We declined to stay much longer, even though we are offered a meal. I thought it best he gets used to the routine, the room and the requirements of the institution. We leave him at dinnertime - hoping for the best.

Declaring Dad Incapable

2006-08-15T08:19:00.000-07:00

The official papers are signed. He is now a candidate for a government bed in a LTC facility. We are wondering if he is suffering from a urinary tract infection again, as he seemed to need to urinate every ten minutes or so. His hearing seemed all right today and he ate his muffin in his room as I watched. His knees and feet are so bad – so swollen.

We had bought him socks to keep the swelling down. It is hard getting them on – but he had two pair he wore only in the day. The staff rinsed them out every day. It seemed to keep the swelling down, but Gay phones Dad’s GP and he prescribed diuretics. They went down a bit in time, but never got back to normal. Getting old sucks. The alternative is worse, however, and we keep on trying to do the best we can.

1:00 a.m. phone call

2006-08-12T08:17:00.000-07:00

When you get a call in the wee hours it is easily either an emergency, or the Manor need to talk to me, or some nutbar. This time it is Dad again. It is bittersweet relief. Brian takes the call for me. The first time Dad grunts “Uh” and hangs up. The second time he manages to say that there is something wrong in the upper or lower part of the house. Fire is a big concern up here. We wonder what is up. But he does not think we can do anything and we convinced him to hang up and go to bed. The third call is something about the burners.

Fortunately, the duty staff take the phone and said there is no problem – no fire – no worries - he just cannot sleep or make the TV work. She tells us he is confused but not afraid. I called the Manor in the morning and they said he’d been up until 2:00 a.m. and then went to bed. He then got up at 7:30 and went down to breakfast.

OF course, Dolly, Dad’s neighbour, does not need Dad watching TV since he had to crank the volume up so loud it sounded like fight night next door to her. Poor woman. It seems as if it is after dinner that the panic starts.

Is this sundowner’s syndrome or a foreshadowing? Many elderly adults miss spouses and they become very sad and agitated in the evening. It seems to be something
By the time we managed to get in to visit with him he tells us, “I don’t even know what to think about.”
“We’re taking care of you Dad. You need not worry.”
“It doesn’t get a good thing on here.”
“It’s the best they can do, Dad.”
“I asked three girls to help me and they wouldn’t do it.”
“ Dad, they don’t know what to do for you.”
“It’s all wrong now anyway.”
“Yes, Dad. It’s the brain tumour coming back.”
“They’re not taking care of me.” These wonderful women who try to help him simply cannot. What he wants is to be back to normal. This will never get better - I begin to understand. “Lord give me strength”, I pray.

He is terribly confused. He keeps telling me how mixed up it is in his head. This started back during the time he had a bladder infection. He just cannot get things straight and know it. This is profoundly difficult on all of us. How much worse will this get?

Choosing LTC facility

2006-08-11T08:17:00.000-07:00

It is now time for Dad to be placed into another care center. I spoke to Gay and I spoke to case Community Care Access Centre (CCAC) case manager, Kathleen, who said that we have to put him on a waiting list. She says it is best to get him on a list soon, before it becomes an emergency to get him from a hospital into a nursing home, as he can be placed anywhere up to 150 km away. I do some research.

We look around and have a tour through Leisureworld in Gravenhurst. I do not think that there would be much difference in these government-subsidized institutions and we are pleased with the Gravenhurst location. We have to find a location that suits us, since we know we’d be visiting a lot. I filled in the forms and take power of attorney for him. Dad is no longer able to make decisions. His cognitive functions are quite limited. He cannot even keep track of his pills anymore and telling time is now beyond him. There are a number of forms. His attention and memory are gone, but he isn’t a risk for running away; he simply needs 24 hour nursing care.

There are many booklets explaining what kind of facility this is. I duly read all the information. Brian is incredibly helpful in sorting through it with me. He had place his mother into such care several years ago. I am numb when we visited – seeing all the seriously ill patients. The Alzheimer’s floor was the most difficult. Brian’s stepfather had had this condition and he knows what to expect. Brian asked all the right questions for me. He knows the questions to ask having done this for his mother and stepfather.

When a person’s needs become more severe, or they do not want to remain at home a placement coordinator will help and be actively involved in admitting a client into a Long Term Care Home LTC. There are rules and regulations regarding access to LTC. The process begins with a home visit, if one has not yet occurred through previous access to services, an assessment of the client’s capacity. When a client can no longer secure adequate care at home, there is a decision to place the client and navigate them through the process of finding a Long Term Home Care placement. If they choose to stay at home, often-family members have no recourse, unless they are deemed incapable of making this decision. The case manger is in charge of this protocol.

The client, or designated advocate should the client be deemed unable to make this decision, can take advantage of a Long Term Home Care placement and begins to sign a series of papers, The case manager has permission forms such as permission for CCAC to gain access to information from the doctor, and a facility choice list, which is reviewed by the case manager. Sometimes, if client has dementia issues and behaviours that are beyond the ability of a Nursing Home, or extra nursing care, then they must move to a chronic care hospital. They are deemed ineligible for this more intense care if they can drive, or manage their own needs. Then they are advised to go to a Retirement Home. Files are shared with the Long Term Care Homes on their facility choice list, names will go on waiting list until bed is available: whether it be a private room, or not, or the type of accommodations they have requested on their facility choice list. The client must choose no more than three homes, based on location and physical requirements. We made this choice for my father based on proximity to our home.
As spaces become available that facility will contact the case manager, or the client. When bed offer comes you have a few days to accept the bed offer. It is pointed out that should a resident be admitted to the hospital the bed could be kept reserved for medical leave for 21 days. Otherwise they lose their bed placement and are discharged from the Long Term Care Home. If a resident requires a psychiatric assessment they may stay away for as long as 45 days, this is the only exception to the rule.

We traveled an hour to Orillia to rent a walker. Dad had been borrowing one. The government subsidizes it up to 85% - providing the patient is not in palliative care. What difference this makes I do not know. But the funding isn’t there if the patient isn’t going to last long enough to make the paperwork worthwhile, methinks. We do not care. We need to keep him safe and to allow him to move around. He is not happy with this, but we have rented it. We have to pay one month in advance. Now the trick is to get him to use it. He likes to put his shoes, newspaper and other things in the basket. It is a great item to have – I wished he’d been using one before but only “sick, old people” use them he tells me.

Phone calls and tornadoes and power outages

2006-08-02T08:14:00.000-07:00

My friend, Eileen, came for a visit from Ottawa weekend. It was her birthday this week and she had combined a visit to Peterborough with a bit of a side trip to see me. I missed my dear friend very much. Brian was in Ottawa and Eileen and I were merrily preparing to have our second day of our girl’s visit. We were down at the water, swimming, when we saw the clouds rapidly approaching. I know we were in for a storm – but what a storm. We casually cleaned up our swim accoutrement and headed up to the house. We opened a bottle of wine and sat on the sofa visiting, watching the winds pick up. I had planned on barbecuing steak later, a fine end to a fine day. The winds picked up and then slowly changed from wind to gusts to a torrent of water and wind. The leaves on the tress were blowing in directions that do not make sense. There were down thrusts of wind, common in the area I found out later. They snapped off branches and surprised both of us with its ferocity.

The phone rang and it was my father. He was very upset. He had his good days and bad days. Today he was most upset, as the TV isn’t working. He had been such a go-to-it kind of man. If anything broke he would be able to fix it and make it right. With the advent of technology some things begin to be beyond his ken and this made life more difficult. At the time I really did not understand how severe this storm would be and I tried to calm Dad down. Our power had gone out and he really could not empathize, TV and his sports shows being much of his life nowadays. I tried to calm him. He was quite upset that I could not help him fix his TV.

I felt as if I had let him down in some way – but could not see myself driving the 30 km in to see him, even if I could do something about this situation. We finished our conversation, I said goodbye to him feeling a huge cloud of guilt settle over me. The winds had abated somewhat, and I began to get the barbecue going. I had never barbecued in the dark, the deck lights being quite efficient. I did my best, without power, and we had a salad with our meal. The candlelight was quite gorgeous. Eileen and I had shared many meals as we had gone out every couple of months on a regular basis to the theatre when we lived in Ottawa. I missed my old life. I made the mistake, in my depressive state, of not reaching out to someone, friends all left behind in Ottawa. I had no support system other than my children and husband. It was not enough.
We took a trip into town the next day. I had to see Dad, and Eileen and I wanted to get some groceries. Many stores were out of power and did not get it back for days.

After visiting with Dad in the hall, I thought it time to go. He hadn’t been all that clear with me. Complaining about one thing and another. I went out to the car and asked Eileen, who was waiting with groceries, if she wanted to see Dad. He was quite happy to see her, although they’d never met. She is quite attractive and my Dad was quite perky seeing my beautiful friend after being morose with me. This is something I had found with many seniors. They were angry with close family, but remember their manners when interacting with outsiders. I was angry at this. He had been begging me to stay longer a few minutes before, but after talking to Eileen, in an apparently normal fashion, he told us to go off and enjoy ourselves. He was a different man. I just could not understand it!

Two Doctors in Toronto: The Final Diagnosis

2006-07-26T08:13:00.000-07:00

Dad had an MRI in Toronto. The only way to get him there was to hire an ambulance. I had to be in Ottawa and we hired a companion to accompany him on the long (1 1/2 hour drive) to Toronto. Both retirement homes and LTC homes use ambulances to deliver residents/patients to important appointments. Dad was unable to sit up in a car and I could not manage him.

A meeting follows up dad’s MRI with his Toronto oncologist. Dad had a 2:30 p.m. appointment with her & a 3:00 p.m. appointment with another doctor. I don’t know whom the second physician might be, but make arrangements to take Dad into the city. I had met the first doctor previously in Toronto with Dad. Dad is ready a couple of hours before our estimated departure time. He loathed being late. I made it to the residence about a half hour before they are due. The problem with conveying patients like Dad to such appointments, aside from the distance, is booking an ambulance to get him there. I cannot manage him alone. He cannot walk and I cannot help him. The ambulance is delayed an hour and a half due to an emergency in another town. Dad is quite upset with the delay.

Eventually they made it. I sat up front with one attendant - who drove. The other stayed in the back with Dad. Dad needs to urinate every 10 to fifteen minutes or so. This became a problem fairly quickly as Dad is unable to pee in the bottle when horizontal. The kind young man, I called him Steve 2, since the driver is also named Steve (number one!). I can hear Dad and Steve 2 talking as we drove. It is a relief to sit back and relax and chat with Steve 1 while we made our way to Toronto on the highway.

We arrived at the hospital for our appointments and checked in. They take us into a back hallway, where the doctor’s offices are located. We waited, likely a half-hour, after I sent Steve 1 and Steve 2 for a coffee. As we waited I try to chat with Dad. I can hear another man in the hallway complaining that he had driven in from out of town for this appointment and had been waiting three hours. I feel somewhat guilty, since we got in quite quickly to see the doctor, who is now behind in her appointments by a long shot. We are paying for the ambulance by the hour and I kept my mouth shut. Wait times for appointments are one thing, but waiting times, when you are scheduled for a particular time, is another issue.

In retrospect, I wonder why on earth we had to drive 250 km, taking up the time and energy of two paramedics and an ambulance to tell Dad that these doctors can do nothing more for him. It is a distressing meeting. The radiation does not work, the tumour is back, and, therefore, chemo will not do anything for him either. It is Mom who decided that they would go ahead with the radiation in the first place. I truly question it now. If only I had read the statistics and asked a few more questions. If only I had been able to talk to their doctors all along this medical journey.

Dad’s oncologist is going on maternity leave shortly, she meets with us, and then introduced the second doctor, who is taking over her practice while she is on leave. Now things become clear. Yet, we never saw this doctor again. Dad’s oncology treatment is over and it is going to be a matter of time before he passes. I truly do not understand why we had to meet both doctors. I question, too, why there is no follow-up with my father. I wonder why they don’t tell us about the statistics. Is there anything to learn from all this? For example, what is the impact of the radiation? Is there justification for giving an 81-year-old radiation? What is the prognosis? The odds of success are not high, I find out later. Tumours tend to come back in the elderly. Treatment does not have much chance of success.

Both doctors’ ‘bedside manner’ is most empathetic. They are visibly dismayed by having to deliver this kind of news. Dad, once the doctor yelled loudly enough, managed to let Dad know that they can do nothing further. He seemed to understand this, later conversations tell me so. The doctor tells us that Dad has two tumours in his brain right now, according to the MRI done last week. One is inactive, but the other is growing. I know this all along. Dad’s difficulties with language had begun back in the spring. They are similar to his original problems when they first removed the tumour. He was totally aphasic at that time. It is a clue, his difficulties with communication, that there is something brewing. We should look to ensure that he is as comfortable as possible.

The doctor tells me that tumours that do not respond to radiation do not respond to chemotherapy. In younger people they can give it a shot, but in older people there is a toxicity that does them in. We have to manage his health care needs and determine treatment as we encounter each barrier. They said there will be pressure and headaches, as well as increased irritability. I wish I can go back and ask some my questions.

I asked for a time frame and the doctor tell me that when he starts to sleep half of the time he likely had a month leave. After Dad’s surgery in 2003 he would get up to put on the wood stove around 5:00 a.m., then go back to bed for a nap. As often as not he would sleep until 4:00 p.m. worrying Mom endlessly. She complained about this a lot. I am not sure how we will figure this out.

The paramedics came back and they are very considerate. Both Steve 1 and 2 asked the prognosis, and I tell them about the sad but expected news. I begin to feel awfully emotional. I am able to focus on getting Dad back to his residence. Steve 2 is a hoot in the ambulance. He and I talked of lots of different things. I will say he rather babbled. They, too, are most supportive and in giving me their condolences. It is a long drive back north through thunder and rain. By the time we made it back to Gravenhurst there is a huge downpour. I got soaked just going up the 25 steps from the ambulance to the front door. Dad apologized for getting the ambulance wet, as he had lost control of his bladder. They assured him that it happened all the time.

In hindsight – my brother and I had made a mistake. We know in May that Dad is getting worse. We chose a retirement home without any Long Term Care capabilities. It is a great place. However, knowing that he is quite ill, we should have realized that since he is going to get worse it will been easier to move him once and then we will been able to move him from the retirement wing of a Long Term Care Home to the nursing section. It would have been less traumatic since the rooms look similar.

Ears and other bodily functions

2006-07-24T08:12:00.000-07:00

Another visit in to see a sleepy Dad. He just does not want to do anything. We respect this. I find his glasses for him and helped him get dressed. By now staff are letting him sleep in until after everyone else had eaten. They bring him a muffin and coffee and juice on a tray. They do not have the staff for such personal care but they kept it up for a time.

Dad calls his room his ‘home’. He will tell me that he wanted to go home if he is in the hall. His stomach is giving him problems, too. He tells me he is, “Grindey in his stomach”. He made it to supper alone some days, and after a meal he feel better. The doctor had been in to see him. Dad wouldn’t speak to the doctor since he hadn’t seen him since Mom had died in May. Dad’s GP is ill himself but no amount of talking can convince dad of that. He is merciless. Dad has infections in both of his ears, his prostate and a urine infection. No wonder he had to urinate constantly. He wanted the pee bottle, rather than going the four feet from his bed to his bathroom. I cannot understand how he can get this ill. I guess the infection he had had last month had not been cleared up.

We ended up putting oil in his ears weekly and washing them out with a syringe and bulb. He is on more meds than I can keep track of. I am so glad I do not have to worry about it. He and Mom are always careful about taking meds at night at exactly 8:00 o’clock. This is still an issue, but not for long.

Visiting Dad's Lawyer

2006-07-17T08:11:00.000-07:00

Dad’s lawyer has to evaluate Dad to see whether he is competent or not. He will do an assessment of Dad’s capacity.

I am going to take control of Dad’s financial matters, since Dad cannot even write a check. We have power of attorney for this. Dad was violently opposed to this in June. He thought he could still keep track of things. We have to check out and renew insurance: life, car, home. As boarders living in Dad’s house Brian and I have tenant insurance.

Dad’s June, 2006 Prostatitis

2006-06-01T08:02:00.000-07:00

Dad has an infection still. We find that he still needs much care. He continues to urinate frequently. He is becoming increasingly difficult. Little do we realize how ill he is. I continue to do his bills, collect his mail, and try to look after his affairs. He cannot write checks, but had just enough energy to sign them.

I picked up the mail today. This is to prove the most difficult and long-lasting issues of the grieving process. My parents continually received mail from organizations to which they had made donations. Soon I will receive a letter from my mother’s best friend since her childhood. She had moved to the United States and they hadn’t visited in many, many years. I did not recognize her name in Mom’s address book. She wrote to Mom asking what is going on as she had phone twice and hadn’t heard from her. I had no idea that Mom had kept up with her, nor did I know her married name or recognized the foreign address.

I find her phone number in Mom’s obtuse address book and make the call. There is no answer. I leave a message saying that I am Joan’s daughter and wanted to talk to her. She does not phone for a couple of days and I phone back. This time Betty is home. I explained to her what had happened and feel so very sick at heart. Having gotten in touch with a couple of bereaved spouses in trying to contact all of Mom’s friends, I am reluctant to do so again. We spoke for a half hour. Mom had phoned her and said her good-byes, although Betty did not know it at the time. This is a story I heard several times over.

One issue that concerns me is knowing who is visiting Dad and keeping track of his caregivers. We are promised, by CCAC, that he will continue to receive extra care. I bought a Guest Book, in a silver (manly!) book cover with a silver fine pen for Dad’s room. Some people are most kind in signing it for us. It frustrated him no end when he cannot recall the names of visitors. It is a great investment.

Dad goes into a retirement home

2006-05-29T08:00:00.000-07:00

Robin and Brian did the research on the retirement and Long-Term Care (LTC) homes. They tour several in the area and speak to staff. The decision is to put him into Gravenhurst Manor. Brian, with his experience finding a home for his mother, is a big help. I pack up Dad’s things and we talked about the furniture to take. Dad has not visited, but he is not sentient enough to understand.

In hindsight, from the research and recommendations from professionals, I should have packed more simply. All items need to be labelled, too. He needs his toiletries, a housecoat, slippers, a pair of running shoes, four pair of pajamas, and six changes of clothes, i.e., six undershirts, six shirts, six pair of pants or jogging suits. All of these places offer laundry services and this is all that will we need. Also helpful: a sun hat, a winter hat, and a couple of sweaters, and a seasonal coat. There is not a lot of space available. Dad’s room is crowded as it is. Many of his pants do not fit him and I am unsure what to bring. I am overwhelmed. I take far too many clothes in for him. There are things in his room he has not worn in years, but I have no way of knowing this. I will regret this considerably when he has to move, yet again, into the LTC home.

We ease him into the idea, but he suggests that we live with him at the house, despite our two cats - which are afraid of dogs. It is such a battle to get him to come to terms with the move. We reiterate that there is no choice.

I book a local man, Paul, to move Dad’s things for us. He has a trailer and has helped me clear out the basement of 30 and 40 year old things. Paul is terrific. Paul and his friend, “Old Burt”, begin the chore. Burt is nicknamed “Old Burt”, because whilst on a job a client asked where ‘the old guy’ was. Burt is actually younger than Paul. We kept up the moniker for a long time. I keep Dad busy in the living room while my brother helps carry things out.
I drive Dad in his van. We make it into the Manor with no trouble. We have done most of the paperwork beforehand. My brother and husband have visited several places in the area and find this place to be great. They have one bedroom available in a big private room. It is too bad Dad cannot have gone there earlier, with Mom. They will enjoy the atmosphere and the conviviality. We ask Dad where he wants his bed. He wants to face the window. We get him set up

We loved the atmosphere of The Manor. It is a well-appointed facility, with a variety of private, single and double rooms. The furniture is mostly antique, with period nick-knacks meant to make the residents feel at home. The paneling on the walls compliments the polished mahogany pieces, with all the little nooks and crannies that were popular in their day. Antique doll carriages and dolls decorated the corners. The local florist donates an arrangement weekly. The Sun Room is bright and cheery, with new curtains and comfy furniture. There are wide hallways to accommodate the inevitable walkers that made life easier for residents. Located on a main street, there is much local traffic. Parades and other regular events draw crowds and provide entertainment. The annual garage sale is orchestrated to coordinate with the town street sale. Residents are primarily able-minded, with some locomotion issues. They can walk across the street to the various churches, go to Stedman’s for coffee with friends, or be picked up by family for celebratory dinners and special occasions. Happy Hour is a fun time to visit. Some residents move in there for the winter, moving back to cottages for the summer. I am glad that Dad has the money to stay there. It makes life so much easier.

Dad loved his room. Later he will spend many late night hours gazing out of his window. We will look out at the church and see the white lights. He thought they were birds. One day he tells me that the birds have flown away in the night. He liked to watch the people go by.
We saw that the previous tenant had pictures on the walls. Rob and I talk about this. We think we should have one of the cottage or the lake. Robin putters in town. Rob, Dad & I were trying to decide which paintings to hang in his new room. When I went back to the cottage, a painting of our cottage frontage had fallen off of the wall. I figured that is a sign from Mom that that is the one I ought to take in to Dad.

treatment stops

2006-05-21T07:59:00.000-07:00

Robin and I decide that we will not take Dad in for more radiation treatments. He is just too ill and cannot sit up. He is urinating every ten minutes. He is leaving the tap on and letting the water run all night - when he remembers to wash his hands. I find out later that this kind of memory loss is indicative of dementia due to the brain tumour in his frontal lobe. Dad is both delirious, having symptoms of dementia, and fighting the brain tumour. Aside from the aging process, dementia and delirium in old age include the following characteristics. Dementia is associated with, but not limited to, Alzheimer’s disease, vascular dementia, alcoholism, toxic reactions to medication, infections, metabolic disorders, malnutrition, and brain tumours (Pinel, 2006). (See week 9)

Dementia (i.e. senility) is an abnormal progressive deterioration of neural functioning. It means
- memory impairment
- diminishing intellectual ability
- poor judgement
- difficulty with abstract thinking i.e. math, thinking skills.
- personality changes

Delirium:
- changes daily
- disturbance of consciousness
- disorientation, wandering attention, confusion, hallucinations
- affects up to 50% elderly hospital patients
- response to stressors: illness, surgery, drug overdoses, interactions of drugs, malnutrition (Cole, 2004)
- high death rate for those undiagnosed and sent home from hospital (Kakuma et al., 2003)

Alzheimer’s disease
- Accounts for 70% of dementia cases
- Affects 5% of the population age 65+ (Blazer, 1996; Regier et al., 1988)
- Affects 40% of those over age 90 (Williams, 1995)
- Patients die on average 8 – 10 years after onset of symptoms
- 2 -3 years before dementia usually difficulty learning and remembering verbal material (Howieson et al., 1997)

These are all signs. Not all dementia is Alzheimer’s disease, but these are the signs to look for. It means Dad’s tumour is progressing.
- first significant sign is memory loss
- develops into dementia
- affects simple activities: eating, speaking, recognition of family members, bladder control
- neural research is focused on predementia Alzeimer’s patients
- memory deficits are more general than medial temporal lobe damage, medial diencephalic damage or Korsakoff’s syndrome (alcoholism) (Butters & Delis, 1995)
- anterograde and retrograde deficits are major in explicit memory tests
- implicit memory for verbal and perceptual material is often deficient (Gabrieli et al., 1993; Postle, Corkin, & Growdon, 1996)
- level of acetylcholine is reduced due to degeneration of basal forebrain
- strokes in this area can cause amnesia.

The first funeral- part 2 delirium

2006-05-20T08:04:00.000-07:00

For a week Dad was up at night, lighting the wood stove all alone, urinating on the carpet, and falling asleep on the floor. He could not get to the bathroom due to physical, emotional, or locomotor issues. He left taps running and still couldn’t figure out his medications. When we found him in the morning he was there on the floor in a puddle of urine. Dad was so ill we decided that Robin had to take Dad to the hospital. The rest of us, Brian, Caitlin, Jean–Luc, Jesse, Terry, and I took off to attend the funeral. Now, in hindsight, I know that Dad was delirious (see the final section of this book for more information), from either the radiation, his urinary tract infection, or the multiple drugs he was taking.

Dad was so ill this morning. We have a private funeral planned. Robin decides to take Dad to hospital. We had had many people visit for the visitation and Robin had been there. Robin will miss the funeral. At the funeral home everyone asks about Dad and I have to tell him or her how ill he is. Dad is incoherent. We do not know that this is not normal after radiation treatments and he is susceptible to infections as a result of this. Dad is getting up at night, lighting the fire alone, and falls asleep on the floor. He cannot get to the bathroom due to physical, emotional and locomotor issues. When we find him in the morning he is there on the floor in a puddle of urine.

My brother missed his mother’s funeral. At the funeral home everyone asked about Dad and Rob, and I had to explain the turn of events. Dad was incoherent. Everyone said that the last time they saw him he was “just fine.” We did not know that his incontinence was not normal after radiation treatments, and that he was susceptible to infections as a result of this treatment. We did not know if it was the tumour affecting him or the numerous pharmaceuticals. More lack of communication and information--there should be a pamphlet or something that can be given to family members. Mom and Dad were beyond comprehension of the effect and the potential side effects of radiation. Again, they did not ask questions.

The First Funeral

2006-05-20T07:58:00.000-07:00

We had a private family funeral a week after mom died. What a mistake.
Our three adult children, Terry, Jesse, and Caitlin, as well as our son-in-law, Jean–Luc, came to town for the funeral. It was good to have family around us. It is a shame that we seemed only to meet for hatching, matching, and dispatching (baptisms, weddings and funerals!). Jean–Luc and Caitlin had driven Terry in from Ottawa. To get Jesse here we had to arrange for him to fly in from summer work in Connecticut. If Dad had not been so ill, it would have been fun. As it was, we were preoccupied with caring for Dad, as well as ourselves. Everyone was great pitching in with meals. The boys all hung out together, Robin, my late forties brother, Jesse (twenty-three years old), Terry (twenty-one), and Jean–Luc (twenty-eight).

Preparing for the funeral and visitation demanded a great deal of me. It was therapeutic, however, to look back on Mom’s life and her life’s work. On the left is her urn, with a few artifacts that represented her to me. The Celebration of Life meant a great deal to me, with many visiting. There were arrangements for her cremation, the writing of the eulogy, preparing the order of events, booking the minister and organist. We had a large celebration in July, when we were a bit more together.

Caitlin met me at the funeral home, and the men went to the house to prepare dinner while we girls set up the visitation room with photos and artifacts. That evening, the men had a grand time getting to know one another again. It wasn’t since Caitlin’s May 2005 wedding that we had all been together. My sons were masters of ceremony at their wedding, so they hadn’t had much time to visit, and Caitlin and Jean–Luc had been rather preoccupied with numerous friends, family, in-laws and outlaws! The wedding was a fine time for the rest of us to visit with my mother, who was in pain but was pleased to attend the ceremony and reception. I prepared a slide show, which included many shots of the kids at the cottage with Mom and Dad. It was lovely to honour those early years. After the speeches, Mom was taken home early by my devoted brother, where she could rest. I had never seen her so weak and was grateful to be focusing on my speech and the joyful occasion.

My daughter and I, Caitlin, bring one vase of flowers home, take one to the church, and another we take to dear friends in town. Caitlin and I prepare lunch. After the funeral my boys, Jesse & Terry, will help Brian and Robin bring Dad home from the hospital. Medical staff cannot find anything wrong with Dad that they can fix. Robin needs help getting Dad home. Brian wakes Jess to dig out the map and locate the hospital. Jess has had a long plane trip here from Edmonton. Jess has fun navigating and finally gets them up to the hospital. They find out he has the map upside down. “Gifted, eh?”

They had a bit of difficulty and make it home long after Caitlin and I have done our chores.

Mom’s Passing

2006-05-13T08:28:00.000-07:00

Brian is going to meet me here at the hotel in Toronto on this afternoon, I presented two workshops last night. I am so happy. It is a much- needed break. It is easy for him to fly to Toronto from Ottawa. I take off early for the university, again, to deliver my remaining workshop. I have heard no word from Bala and hesitate to phone them. While out presenting the workshop Robin has phones me at the hotel and leaves a message. Brian, arriving in the hotel while I am out, returns the call to Robin. Apparently, on Friday, Robin took Mom to the hospital in the evening. Mom asked her neighbours to stay with my Dad, who still is not well. They cannot do anything for her and so Robin brings her home about 3:30 a.m. on Saturday. They went back to sleep and Mom and Robin woke around 7:00 a.m. and talked a bit about grandkids and so on. They have some good chats.

Her breathing gets more and more shallow. Eventually, around 9:00 a.m., Robin looks over to her and she has stopped breathing. Dad, on prescriptions for infections, is quite out of any concept of reality. He becomes very upset and tells Robin to get her body out of the house. Poor Rob has to hustle, with cousins, to find an undertaker to remove Mom’s body. Dad is emotionally distraught, Rob says, and cannot deal with all of the things he needs to deal with. He does not recognize Mom’s body as his dearly beloved late wife. Dad is suffering from prostatitis, which we do not know at the time. He is incoherent much of the time and is having difficulties getting to the bathroom.

I must go back in time to explain this first problem. Mom and Dad named my cousins as executors in their will. We are not sure why, since the will was redone in 1998 and Robin and I were adults at the time. These cousins live in Guelph and it is a fair distance to visit here, especially since they have a farm. These cousins happened to be visiting in the area at the time. Robin and my cousins (husband and wife) take Mom’s body to the Funeral Home and made arrangements to have her body to be cremated.

Once at the Funeral Home, they begin writing the papers. My cousins declare my father unfit to be in charge and take ownership of the problems. Dad is in no condition to take care of these things. In hindsight, my brother and I should have simply signed the agreement with the funeral home and taken control. We have power of attorney for both medical and financial. All of the arrangements have to be done between my cousins and the funeral home from now on. We cannot even take her remains out of the funeral home, to the memorial service. Our cousins have to sign a letter as executors giving us permission. Later we take this control as Dad is incapable of physically singing checks and making financial decisions, but that is a long way down the road.

In the meantime, my cousins begin acting as executors and once they have done so, since Dad cannot at the time, they have complete signing authority for all matters. This became a problem later when trying to remove Mom’s name from documents and put them solely in Dad’s name.

By the time Brian and I arrive from Toronto the funeral arrangements are arranged and the contract signed. We write her funeral announcement at the funeral home, which has been started by my cousins and my brother. Robin does not know some of the names. In hindsight, we should have postponed the small family funeral until a later date, rather than having it a week later. Her obituary leaves out her dear adoptive sister in Lethbridge, whom I had not seen in more than 25 years. I feel badly – another mistake.

Mom and I spent some lovely, quiet, peaceful times together during her final months, in between arguments. Mom know that they need new carpets and she do not know if she should get them in green for her or blue for me! In March, Terry phone her to thank her for his birthday check and she admitted to him that she ‘isn’t very well.' She was nakedly honest with him. She knew he do not like any guff!

Losing one's mother

2006-05-12T09:26:00.000-07:00

A post entitled, Mother as Place, makes such sense to me.
Our mothers provide unconditional love, in a healthy relationship. This is why the death of our mothers has such a profound effect upon us. Mothers are our spiritual home and hearth. Mothers are there, even if only at the end of the phone, to listen to our woes, our travails, and soothe our troubled souls in the time of many of the normal and traumatic life passages we face as adults. I changed jobs and moved from city to a small town, to care for my ailing mother and father. It was no wonder that I entered into a depression. I was living in a foreign country, as it were. Not only that, but my new school board operated under a different culture than I was used to. I was swamped with change. However, after a lifetime of listening and providing only sought for advice, my mother and my relationship changed profoundly.

After a lifetime as a beloved “chosen” adoptee, and living a life of unconditional love, things changed. My mother supported me in the past in getting an education, in dealing with an unhappy marriage, raising three children. She saw me through a divorce, buying a small house on my own, and a joyful second marriage. There was no question that she was behind me. Once my mother had bravely fought her 5th cancerous lump, our relationship began to deteriorate. I knew we had to come to terms with this stage of life and read all I could. Mom wanted no part of research or literature. She followed physician and oncologist’s recommendations to the letter. She found a lump just before my 2nd wedding and put off surgery until our wedding was done. She had surgeries again in 2004, 2005, including removal of her lymph nodes, which led to lymphedema in 2006. She had radiation in 2005, chemotherapy in 2006 all the while suffering from colitis, poor hearing even with a hearing aid, wheat allergies (celiac disease), agoraphobia and a husband who had a brain tumour.

Living 430 km away was difficult and I insanely believed that we would both be able to participate in the dying process honoured so well by Elizabeth Kübler–Ross. We fought over her care regime, the condition of her house, my life path, and it was a shock to me. She was so ill, yet sentient, and seemed afraid that I had moved here to get her out of her house. The choices I made in moving closer to be of help to her were conscious ones, but she wanted no help. It makes sense to me now, having written and thought long and hard over it. We could not agree on having her accept home support. She refused such help until her last month of life (May, 2006).

Mom was in charge of my father’s care by long-distance and phone. She made decisions about his care that were contra-indicated with all of his comorbidities. On the phone she spoke to the oncologist and they decided that dad was to be swept up, taken to Toronto, given radiation, then, when the radiation didn’t take, being sent home to die with little in the way of home support.

I went into a depression and had no hope of getting myself help, since I was too depressed to reach out. I was isolated from friends and immediate family, and it ended up that my extended family seemed not to understand, for the most part. I was scolded, lectured and ostracized by various branches of my family tree. I gained weight, overate, became solitary and threw myself into solitude by the lake. At the same time, I was working in a job that was stressing me beyond all reason.

I look back now and I can honour my mother’s choices, and feel no guilt that I was not there when she died. She sent me from the room the day before she died – perhaps to protect me, I am not really sure. I felt anger once that she did not think me strong enough to handle this. Our views were different on death and dying. We both embraced a belief in the afterlife. We had strong beliefs that we would meet our loved ones in the afterlife. Mom was psychic to a certain extent and foresaw the passing of my uncle. Our faith in God was strong and family life included regular attendance at church. But when she was so ill, in pain and denial of her situation, things fell apart. I know I did the best I could at the time, with the information I had on hand. I will never regret the choices I made. I hope that in writing about them it will help others.

Recommended readings:

Kübler–Ross, E. 1997. Death: The final stage of growth. Carmichael, CA: Touchstone Books.

———. (1998). The wheel of life: A memoir of living and dying. Carmichael, CA: Touchstone Books.

Kübler–Ross, E., & Kessler, D. 2005. On grief and grieving: Finding the meaning of grief through the five stages of loss. New York: Scribner.

Mom's final days

2006-05-12T08:26:00.000-07:00

Mom gets weaker. She eats about a tablespoon of food a few times a day. I ordered potato salad from the corner store. I order it specially, as this is not tourist season and they do not have much in the store. They were most amenable to helping me out. She ate little of it. She sleeps and eats a mouthful and that is all. She is very tired. Today I leave for Toronto for the Conference. I phone the Community Care Access (CCAC) people yesterday and asked them to send someone. Rob and Dad are expected form Toronto around noon. Until then she will be alone as I have two workshops to present on Friday and one on Saturday.

I check on her at 7:45 a.m. and she cannot physically get up. When she woke she said she feel pressure on her lung. She cannot breathe very easily and when she sits up she gets dizzy. I tell her to lie down. She is coughing up small amounts of dark mucous. She has a sip of water and then I phone her Doctor. I ask if she wants to go to the hospital and she said, “No, Let’s wait for Doctor. To arrive. He may have a solution.” She sent me out of the room. I know I am stronger than she thinks I am. It is a peculiar situation for me. I had seen all the shows where the family gathers around a bedside. They get back as much as they receive in being with ailing family members. I did as I was told and went downstairs.

By 8:00 a.m. the cat is pacing and the dog is upset. I clean the basement out since they are coming to install a propane furnace. It takes me two hours to sort through the years of junk. The dust is incredible. It is good to do something worthwhile.

It is pouring rain. It cleared, but another weather front is moving in. The water pond pump is off, likely broken, and I have another phone call to make. The rain lasted all night and the pond has over flowed. Maybe it is just a circuit.

By 9:15 a.m. Mom is wearing her adult diaper and I have to change it for her. She cannot do it herself. It is humbling to help her this way. Finally the doctor arrived. He tells me that there is thrombosis in her right leg, which means a blood clot. He said it is the tumour that is pushing up on her lung and she is now palliative. He asks her wishes and I tell him that she wants to stay at home. There is nothing else they can do. Dying is hard. It is comfortable here and the same things will be done here as in hospital. He tells me he will order oxygen to help ease her breathing. Lana, another nurse who has never been here before, is coming for 11:00 to 2:00 p.m. I meet her at the front door and explain the situation. Mom do not bother having her pain pills Rx filled a few days ago after the failed 2nd chemo visit. Robin will have to do this. Big mistake. Rob and Dad are due about noon. I have to leave.

After I leave, a company delivers oxygen: a mask and a tank, which they take upstairs to her. Mom wants to come downstairs, but I want her to save her strength. In my note to my brother, in the communication book, I fervently beg him to keep her upstairs. I need a place to sit to get a break; if she is down here there will be nowhere to go. There has to be a place for me to just sit and relax. If she is in the main living area it will be very difficult. She has been coming downstairs every day – a few steps at a time. I have to walk behind her when she went upstairs at the end of the day. I am afraid she is too weak to climb them.

I buy Mom some flowers in flowerpots before I leave for my conference. She always liked large flowerpots on the deck. I buy a small bud vase for the table, with a carnation and a little bear that said, “#1 Mom!” on it. I am so glad I did. I will be back the day before Mother’s day, the 14th, but I know I have to act quickly. Who knows what I will time for later?

I take off around noon to go, driving to Toronto, and preparing for the three workshops I will deliver. It is a pensive drive. How relieved I am to get a break and take my mind off the stress of caring for Mom; an independent, fiercely private woman disinclined to let anyone know how ill she is. I continually asked relatives for help but Mom denies that she needs anything from them. She tells close friends not to visit. I think, in retrospect, that she is ashamed of the state of her home and her inability to keep up the meticulous housecleaning practices she is used to maintaining. She refuses to wear her adult diaper except when I nag her. There are spots on the carpet all over the house.

The Red Cross caregiver gives Mom a half glass of SoyNice. Since Mom has problems with milk tolerance, this is a terrific meal replacement. Easy to drink. Corinne, the CCAC nurse, came by and leaves a note. She will have a nurse there daily.

I made it to the hotel, take valet parking, check in, and try to get organized. I unpack my things and change my clothes. I buy myself a nice dinner and check my e-mail. I spend some time working on my three workshop presentations. I should have phone home, in hindsight. I do not want to disturb anyone, I guess. I trundled off to the university where I will present that evening. It goes well and I quite enjoyed the experience of sharing my expertise with colleagues. It is comforting being at this end of the learning curve. I feel confident finally after years of feeling as if I do not know anything.

Make a joyful noise

2006-05-10T13:39:00.000-07:00

“Make a joyful noise unto the Lord” is the motto that drove our family. I had sung in choirs since I was in my early teens. During my long drive to work, I found solace in music. I played various CDs and sang out, sunroof open, at the top of my lungs to the animals and trees and small lakes I passed on the long drive to work. There is peace either in singing or listening to music. I played Meatloaf, lots of vocal music, Christmas music, and I cranked through Messiah several times. Colm Wilkinson’s album Some of My Best Friends Are Songs (2004) struck a chord for me. From “We Are One”: “The slower you move; the faster you go.” I tried to contact Mr. Wilkinson, but he failed to respond. I wanted to print the words from this song as it helped me focus.

These words resonated with me. I needed to be positive and work from my inner strength and access the strength of my family. I used to feel that we were a family and that I was not alone. I memorized the entire CD. I tried to go slowly, feeling burned-out and stressed beyond belief. My work was destroying my confidence in myself as a teacher. My inability to look after my mother very well was destroying my self-esteem. She would accept little outside support and would rebel vigorously against suggestions that we bring in caregivers or find her another place to live. We did have a nurse, Christine (she did not have any choice about the nurse). I rather liked Christine, and we talked about Mom’s case.

Mom did accept help, finally. We had had an argument; I wrote her a letter articulating my frustrations, and we made peace. I knew then that she was really ill. It took me ages to convince her to accept the wonderful services the health agency provided. It turned out that all of her caregivers were terrific people. Although many of her friends had worked hard to help my parents meet their needs in the past few months, and most of them understood and respected Mom’s need to do it her way, the time had come for expert assistance. There was Mom's way and the wrong way. There were Hospice non-profits that could help, support staff that could be hired. I have never been so angry with her. An alien came and took my real mom away. I was left trying to care for someone who denied her illness and no longer cared about my needs. The cancer so coloured and framed her life.

Mom admitted to hospital

2006-04-17T13:35:00.000-07:00

Nearly three weeks in Muskoka had zipped by. Mom was to have her second chemo treatment. She was optimistic that morning. Her steadfast faith, her stubbornness, and the necessity of staying in control drove her. She refused to let me go with her. She phoned for a Cancer Society volunteer driver.

I toddled off to work to try and keep my mind off of things. Work certainly did that. School was becoming increasingly difficult. My students were demanding, needy, Grade 7 and 8 boys who had had little success in their lives. They kept me on my toes. I knew that with enough time, support, patience, counselling, discipline, and remedial work, I could have helped them achieve some academic success and produce some good effort. Unfortunately, I had little of any of these things. They were vulgar, selfish, hormonal boys, with little respect for women, growing into men’s bodies. I had no means by which to maintain control, despite my stabs at behaviour modification programs; it was a difficult battle. I loved my work, I knew I was good at what I did, but every day I had a knot in my stomach as I began to anticipate failure. The only time I felt peace was when on the highway driving between home and school. With the sun roof open, the heater on, and the wind in my hair, I could stay in the present.

This month my favourite music was Josh Groban’s beautiful tunes from his CD Awake. I didn’t understand the Italian songs, but hummed my way across Central Ontario with them. I sang “You Are Loved (Don’t Give Up)” with him over and over, trying to will myself to be positive. I tried to e-mail Mr. Groban's 'people' to get permission to print the song in my book - but no one replied.

Mom began her day in Orillia with a CAT scan. It told the health care staff that she had an embolism, a blood clot, in her leg. Part of this is due to her lymphedema. Instead of having a treatment, Mom was admitted to hospital. She was furious and frustrated. Without her overnight bag, no phone book, no forewarning (Mom could plan her way through a World War), she phoned and gave all of us sundry orders! Beside herself with stress, Mom called several neighbours to make arrangements. She said they “whisked me off the street and admitted me,” and she was beyond any comprehension of the seriousness of her health issues. Had she not been warned of this potential side effect? Was there no explanation of the risks of removing the lymph node? She was not in control--she could handle anything if she had time to plan and take charge of it.

I navigated my way home from work, oblivious to the furor at home. Along the highway, I passed sparkling lakes and shadowy forests; I turned the heat on in the car and opened up the sunroof. It was good to feel the sun.

Then I arrived home and checked in on Dad. It was stressful to say the least. It was a shock to find out the latest news about Mom. One of Mom’s friends, given the task of finding Dad a ride to his dental appointment the next day, was swamped with things she had to do. Dad and I had a great moment when Mom phoned from Soldier’s Memorial Hospital to give orders. Dad felt he was too stressed with worrying about Mom to go to the dentist the next day. He grinned as he held the phone away from his ear--I could hear her giving the Orders of the Day. Dad rolled his eyes as she gave him heck for not wanting to go to the dentist.

Mom never told Dad how ill she was. They never spoke of it. It angered him, he told me later, as she did not give him a say in their treatment plans. He harboured his stress internally. Mom could not let go and let me handle these arrangements. I think I was still perceived as a little girl. My mother was no longer looking after me, but neither was she giving me any credit or responsibility, and I had to look after myself. Dad wasn’t hungry, so I went into town to do errands and to have a well-earned yet solitary dinner.

Friday, April 17 E-Mail

2006-04-17T06:24:00.000-07:00

Friday, April 17, 2006 at 4:36 PM -0500 my cousin wrote:

Thanks for giving the go-ahead to call Joan. So- I called this morning and had a really nice chat with her. Got Ray first and he sounded clear and can hear me fine so that was encouraging too.
Joan mentioned the news they had received that Ray's tumour is back and that he will be going to stay at the Lodge in Toronto for chemo where Rob will assist, having taken leave of work. She feels thankful she could prepare Ray for the chemo.
She said one morning in the shower her hair got all tangled together but that Gracie had come over and cut it short for her.
She was delighted with the little hats you have given her and a friend is going to take her to Bracebridge to select a wig on loan.
She is happy that you are able to stay at the neighbour's while you start your new job and therefore are able to get over to visit each day. She is so very appreciative of help from you and neighbours and friends in the church. She says, "Jane has been a brick" for a number of years.
She is very emphatic that they have no desire to move out of their home at this stage.
She says when she feels they need to, they will and until then, does not want family or friends to encourage them to move anywhere.
She says she wants only encouragement and support so that she can have positive feelings rather than worries to offset these suggestions (helpful as others may think they are) so can use her positive feelings and energies to deal with their situation.

I asked whether she was able to get help for cleaning, and maybe some cooking etc. in the house now that both of them are sick. She said she is looking into this so maybe you can facilitate putting it in place. This could be a more acceptable solution to her than moving.
She is amazing in her attempt to be positive!

I encouraged her to continue to accept the help of friends and neighbours
I think everyone can understand her desire to stay in her home. Most people want to do so as long as possible. My Mom and Dad were the same. After they became ill, we hired Anna, a Philippino young lady, to live there and get meals and do washing and cleaning.

My response:

I think it is fine to call, the only problem has been that when Mom rests (after breakfast, before and after lunch, etc. she takes out her hearing aid.
Dad rests after breakfast (6:30 a.m. or so) before or around 9:00 is the best. Then he sleeps until around 4:00.
Dad’s having radiation!
Mom’s hair has fallen out. It is quite shocking. It is cut short: about 1/2 ".
She is gaunt and has been losing weight. She is quite feeble looking and nauseous.

This is part of what she is surviving on. They have a freezer load of food, but she is exhausted and cannot cook.
Dad cannot stand up for long. His knees are VERY painful. His hearing aids whistle constantly. Brian takes him down to the hearing aid place last time we were there, but they say there is nothing they can do. He fiddles with them, turns them up and then swears, something he has never done, and ends up resting. He fell once bringing wood in, but might fall again.
Mom cannot bring in wood. They heat their house with the wood stove. This next chemo treatment (today, Easter Monday) might just be too much for her.

She had a friend who said would take her to get fitted for a loaner wig.
Since she cannot sit up for long in the car, I do not know how that will work.
My understanding of chemo is that you have three weeks between bouts, by the third week you are somewhat recovered but she is in pretty bad shape.
She refuses to let me either drive her to appointments or to go to the doctor with her.
Our suspicion is that there is a low survival rate for it and she does not want to ask the questions. I do not think she is in any shape to take another treatment but my hands are tied.
She has been refusing home care, although she may have come around on that one.
There is excrement on the carpet, she cannot wear her depends as they chafe, or she refuses to and with her colitis she is rushing to the bathroom every half hour or so. I am going to look for cloth diapers as she might wear those. There is mold around the windows, with the heat and all, dog hair everywhere. I borrowed the van to drive to Ottawa to bring back classroom supplies and Brian had it professionally cleaned, not steam cleaned - there was not time, and there is still dog hair. It is over all my work clothes.
She cannot vacuum much, but does when she thinks she has the energy, and I believe it wipes her out. She made the effort to make her rice bread and had to rest and lean on the counter regularly.

Jane realizes that they cannot meet ANY of their needs independently any more: Mom cannot drive; Dad had his license taken away.
Every suggestion I make regarding calling her CCAC health care coordinator is met with stubbornness.

Dad cannot manage the wood stove and the fire. This is what he has intimated to many people. Mom is unwilling to do move to a house they can manage. She tells Rick that she wants to die there. I cannot fathom how I can facilitate all this. I have a job to do and Brian is at home, in Ottawa, selling the house, I hope. Although, one agent went through the house on Friday and closed the door to the litter boxes and the cats defecated on the NEW carpet. Our wonderful Ottawa neighbour cleaned it all up. The realtor paid for the steam cleaning.

She has made it clear that she wants to remain in the house. Nevertheless, they are living in filth. It is emotionally painful to see her. If she would accept any kind of, say, homecare support, they might manage. A person to clean, help make meals, get groceries, then she could manage, but she is depending upon kind neighbours for everything. If it were short term, i.e. after chemo, she'll be fine, that might be OK, but she is calling up favours from everyone: Jane gets mail, Rose driving Dad to dentist tomorrow, and they are getting tired of it. It is no longer reciprocal i.e. one does favours for one another. She adamantly refuses to put any support in place. At the point in time when palliative care might kick in, we would be OK. But at this point I cannot believe the situation and I am stressed and upset.

I do not have a phone, voice mail or Internet access on a reliable basis. I tell Mom I was putting a phone in to the cottage. (I do not ask!) There is nowhere for Brian to leave me messages. We are selling a house and finding it tricky. The thing is, I cannot be there to welcome Bell in to service the house and cannot depend upon Mom to be able to answer the door. She did condescend to have me book a carpet cleaner.

She is being obstinate and refuses all supports. She is being unrealistic and will not ask the doctor the right questions. I will liked to ask the survival and or treatment rates, but she will not. We do not know if this is killing her or will eradicate the cancer or will give her another year or two.

The house is unlivable in that there is not main floor bathroom. The dog is urinating on the carpets. The den smells badly from the cat urinating on that carpet.

Robin will stay in the cottage as soon as it warms up but mother refuses to turn on the water until May 24th. She thinks that there is a risk of freezing.

They turn the TV up so loud upstairs, when they go to bed at 7:00, that you can hear it in the cottage. We went over, from Jane's, to watch our favourite TV show: West Wing, and she came roaring downstairs upset that we changed the channel, since both TVs work on the same satellite.
Brian has been a brick and it hardly seems fair that we are the children and cannot have anything done for us.

She is using Cancer Society drivers to get them to and from appointments. She refuses to allow Robin to drive their van down to Toronto.

The Cancer Society drivers are volunteers and she is abusing this service.
She refuses to believe that Robin can drive himself, will not take his needs into account.
He will be staying with Dad when he has his radiation, living in the same room in the hospice.

He has pills and one treatment a day. Because Robin missed a car ride to a New Year’s party when he was 18, she refuses to believe that he can take responsibility for the minivan and then have some freedom to get Dad to and fro. She has to do it her way.

They are tired, too. It is every day something new to be done. They need salt for the water softener, food for the freezer. Brian and I couldn’t lug it. They talked Robin into buying it for them.
This is certainly the last winter they can manage.
They need a propane furnace put in.

The cottage we need to have renovated so that the bathroom is usable for us, since we may have to live there once our house sells. I cannot put on my make-up, shower and get ready for work in there.

I do not know if I can stay at my school - another long story. We do not know where to move to, either, until I know my September plans.

She refuses this help. She is too tired to phone people.
She does everything herself since no one could possibly do it her way.

I am incredibly stressed out by all this. Frustrated, too. I cannot fathom how they will manage the next while. Mom is alone all day, the health nurse pops in, but she is NOT TELLING ANYONE THE WHOLE STORY. She is in denial. I am letting it all go. I can only deal with my job. I cannot stand it any more. Robin will be here Tuesday night and he can deal with it.

I have to drive home every other weekend for my course, which finishes the first weekend in May. Then I have a presentation to give in Toronto, 3 computer workshops, actually, and cannot work on them well, since I have no computer access. Because I do not have a home, and cannot get Bell in easily.

I will be taking a postal box at the post office. They do not want to, since I have no evidence of living there, but cannot change car insurance, etc., since I don't really have an address, plus our rates will go up once we move. I have no phone... well the circle goes around...
It is a long story.

But this is it... OUR reality. Not Mom’s.
Take care, thanks for writing.

Jennifer
@->--

Then another cousin, a doctor, writes with comforting words:
Hi All,
I had a short chat with both Ray and Joan yesterday about 7 PM their time. Joan's voice was high pitched and weak, Ray was matter-of-fact, as usual. I really could get little information from Joan other than that she is going to have her chemo on Monday, and Ray having radiation. She acknowledged her loss of hair, but only when I directly questioned her. She was accepting of the situation on the surface, but clearly not wanting to elaborate, and in denial. I do not have your email at the time, Jen.

Why this stubbornness? It's in the genes - look a Grandma - she refused to ever get on the subway, and our Dad? And Lill? All textbooks of stubbornness. This is a fine example of a gene pool of stubbornness. Stubborn is good servant but a poor master. This makes it extremely trying for the family, and particularly you, Jen, shouldering much of the stress. It makes me wonder though, how much of this behaviour you are describing might be from the organic disease - toxic effects of the tumour, or treatment. I don't know.

Unfortunately there is not a quick fix. I have seen this pattern repeatedly in my own practice, and the only way anything would change was if someone just made arrangements, and have them move them into a facility that could deal with the situation, but this do not always work. When it did, there was a sudden mysterious compliance, but no discussion about it. Sometimes as the family doctor I had to do it
myself, with the family's blessings.

I can understand people want to live out their years in their own home, but there comes a time when that is no longer a reasonable option. Denial, pride, control, fear, face-saving, etc etc all play into the situation. And from your description it sounds like there
is not all that much time leave. Is the family doctor really aware of the situation? Has he seen the house first hand, or have you had a chance to talk with him?

Our prayers and thoughts are with you, but I know that's not much help. It sounds like you need to divest yourself of some of this stress! Hang in.

Relatives are here for a week, leaving tomorrow. Every day is a feast, but then it's been raining most of the time and what else to do but eat (and attend church). Today the sun is blasting forth though, so it's off to the beach!
Love,
Your cousin.

Choices & Risks

2006-04-04T10:24:00.000-07:00

It is April 4th and Mom’s 81st Birthday. While this is about dad's brain tumour, mom's illness has a huge impact on the family. Both the two of them, and the rest of us: my daughter, sons and husband.
After a day spent cleaning, sorting and trying to get my head around my new classroom in Parry Sound, I drove to Bala for a visit and dinner. As usual, with Mom’s obsession with perfection, everything is preplanned. All of Mom’s parties were done with panache and grace. She very clearly has a menu. Two neighbours are invited and are here when I arrive. They are terrific family friends, helpful women, both widows, who have done a great deal to help mom and dad continue to live here in their home. One of them picks up the family newspaper, get the mail, and picks up items from town and the other does the Kitty litter every day, amongst other chores.
We make the meal and the three of us work at it, while Mom is on the couch. She is tiring out as she directs the work from where she lays. She wants a particular dish for a particular food item. We cannot quite figure out which is which. Are we ever stressed! I tell her that we cannot find the right green bowl for the chutney; another bowl will have to do.
She said, “It’s my birthday. I can do it my way.” Absolutely adamant! I now understand that I cannot change anything. Mom wants to remain in control of the small things, since she has lost control of the big ones. We announce dinner. We gather round the table, even Mom. Mom manages a few mouthfuls and goes back to lie down on the couch. It is shocking how ill she truly has become.
Dad is back to his chair, reading the newspaper. His tumour is back and he is to have radiation. Robin will take time off work later in the month. This new reality is hard to reconnoiter.
Once of the issues of aging is aging gracefully and with dignity. Seniors needs to make choices that take everyone into account. A senior with ill health impacts on their spouse, their adult children, the community, town, and society. Seniors driving who cannot see properly, or make decisions, or hear traffic have an impact on other drivers. Seniors who make demands on family members and neighbours need to make choices about their situation. We raise our children to act as responsible adults. As adults, we need our parents to make choices that respect us as family members. Stories abound about 90-year old seniors staying alone when they are unable to either cook, or remember to cook. They end up making phone calls at all hours of the day to family members who may not be in a position to support them. I know I was torn between my adult children and my ailing parents. If our parents will not make choices that respect the impact on others, then we, as adult children are responsible.

The same is true for one's spouse. As adults we have to make choices that look after us as caregivers. If you are caring for an ailing spouse with dementia there comes a point when you cannot cope. There comes a time when you have to put the oxygen mask on yourself. Dementia is a scary symptom and difficult to deal with beyond a certain stage.

Living And Dying With Dignity--A daughter's journey

Book availability

Table of contents: my book on Ontario palliative home care and LTC

Speech: stories in palliative care

Monday, Feb. 19, 2007

Preparing the way--Thursday, February 15, 2007

What to expect?

'My stroke of insight'

Insomnia

The oncologist: back to Toronto

A selection of links

A selection of links related to brain tumours, cancer & dying

Book Stop book signing

Book Stop in Orleans, Ontario (on)

BookTour: Authors Speaking at Book Stop - Barrhaven (5-1 Jockvale ...

Mom’s passing--Saturday, May 13, 2006

Hearing aids & diet

Book signing - #1

Advocating for Dad - anorexia

Another book excerpt

Part One: My Parents’ Final Years

Book signing - Sept. 26

Book Introduction

Press Kit

questions about book content

Happy BIrthday Mom

Colours of your love

Live~Love~Laugh

radio interview

580 CFRA News Talk Radio

Bell Telephone

Work stress . . . depression

--Sunday, September 17, 2006

book availability

in stores now!

The Book is out!

Cover Page possibilities

Glossary of terms

Acronyms related to aging

Recovery from Depression and Stress

Conclusions

grief, bereavement, mourning

Healing and the Grieving Process

REFERENCES

Dad’s Passing

Dad's last few hours

as death approaches

PSW care

Note to staff

Brain Tumour Symptoms

What to expect?

Jill Bolte Taylor's stroke of insight | Video on TED.com

pain begins in earnest

Caregiver Stress

Signs of approaching death

Gaunt & Miserable

Long Term Care Act: Bill 140

Refusing to eat -

Brain tumour is taking over

Beard trimming 101: THe big event

Choking & Swallowing

Case Conference for Dad

Thanksgiving Dinner

Incontinence

Selective Hearing

Communication?

Physiotherapy & Dieticians

The White Board

Anorexia

Signs of Pain

Stress Increases

Hearing Aids Cleaned

Visitors

Time for a Wheelchair

Dad’s Goes into Long Term Care

Declaring Dad Incapable

1:00 a.m. phone call

Choosing LTC facility

Phone calls and tornadoes and power outages

Two Doctors in Toronto: The Final Diagnosis